C diff reactive HLA B27 +
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I am 44 and have just been diagnosed with ReA following c diff infection. It started a month ago with left hip pain, spread to the right foot and within a week affected both knees and feet severely, with mild pain in left hip and shoulder. I can walk with crutches most days, sometimes even standing is too painful. I was hospitalised for a week and released after they started me on 50mg of prednisolone. I am also on 10mg targin overnight, 5mg in the morning and 5mg endone 3-4 times per day. 2 days ago I started on methotrexate and folic acid once a week.
I find overnight the pain is unbearable, I am guessing as the steroids wear off? This usually includes flu-like muscle pain. Does anyone else experience this? I use frozen peas for pain relief as well as the meds.
Does anyone have diet advice to prevent flare ups or general pain management advice?
Thanks
0 likes, 5 replies
peter01292 BecsKoAhau
Posted
Hi there...
Nurse here, I suffer from ReA myself.
In regards to your question about Prednisolone wearing off in the night, this is a difficult question.
Prednisolone have a biological half-life of just about 24 hours, which means it won't wear off as long as you take them as prescribed (most often daily)
However, Prednisolone is taken in the morning to mimic the body's natural release of a hormone called cortisol. Cortisol is not released in high amounts and is therefore not very active during the night. This is one of the reasons inflammation processes thrive at nighttime. Both because your body's natural inflammation fighter cortisol is not active, and beacuse energy-craving cytokines (peptides driving parts of the inflammation process) will have more fuel to consume and be very active as your muscles are not expending much energy when you sleep.
Some doctors think it would be better to take Prednisolone in the middle of the night to, simply put, provoke active levels of cortisol during the night time. You'll find interesting studies on this online if you look for it.
So far these studies show that the effect is first and foremost related to improving stiffness which often follow the nocturnal pain of ReA, it doesn't seem to help so much with the pain itself.
You should talk to your doctor about any changes in medication, or your medication routine, and never change medications or take your medications in other ways or at other times than what your doctor have told you. There can be unwanted (difficulty sleeping) and even dangerous (your body will later be unable to release cortisol in a natural way) consequenses from taking Prednisolone at night.
When it comes to painkillers that could help you, you are currently taking Metrotrexate, which limits your options a bit. I find the best pain relief from NSAIDs, but they are not an option for you as they can interact with Metrotexate in potentially dangerous ways, so you should not use them. But your doctor might be able to help you find better alternatives if the ones you are taking at the moment aren't effective.
Take care. Many people suffering from ReA find great relief in Metrotexate as soon as it kicks in.
BecsKoAhau peter01292
Posted
Thanks Peter. I have had huge improvements since I wrote this. Thanks so much for the information. I did end up splitting my pred dose and taking it 12 hours apart. I have done so much research and never read that explanation for night flares so really helpful. The insomnia side effect of taking it before bed wasn't relevant as I was in too much pain to sleep regardless. At least I got a few hours this way. Now down to 12.5mg and dropping but the side effects have been hideous. Gained 13kg in 3 months and my face looks like a puffer fish haha!!
I have ceased all painkillers now as my liver function dropped. I am walking without crutches and doing water physio etc and changed up my diet as well. My inflammatory markers were at 186 when I was hospitalised, my last bloodwork they were at 4! So things are looking good. They doubled my methotrexate to 20mg about 6 weeks ago and things improved from there.
I ended up developing tracheal stenosis from an emergency intubation in February. Also trying to have a defibrillator removed that was implanted at that time as it turns out it was not necessary and I am pretty sure caused my AI response. Hope your health is going well too
peter01292 BecsKoAhau
Posted
Happy to hear you are feeling better, and it’s nice to hear from you. One of the worst things about ReA is the fact that it’s quite rare, and it can be difficult to learn about the experiences of others.
Very glad you have had success with Metotrexate, it’s a powerful drug that helps a lot of people.
It’s encouraging to hear that you are so much better, as I will start taking Metotrexate myself next week. I have had this for 8 weeks and treatment so far have been unsuccessful.
I was put on NSAIDs at first, and they were great for pain relief, but did nothing for the swelling. Cortisone injections didn’t help either. Oral steroids had a small effect, but not enough to be able to throw away the crutches.
Haha... i know what you mean. I tried to prepare for the prednisolone weight gain by never having more food around than needed, but you get so hungry from taking them i found myself begging friends and my girlfriend to bring extra food
I am HLA B27 positive and my doc said i have to prepare for a chronic course though he will be aggressive in his approach to treat this, so I will fight on and find comfort in stories like yours.
The best of luck with your health, hope the current problems you are experiencing turns out well.
BecsKoAhau peter01292
Posted
Hi Peter
I am HLA B27 + too and my ReA started on March 14th. The doctors expected it to be a long process and require more than one Dmard. At first I didn't respond to the methotrexate but once they doubled it to 20mg things improved within 4 weeks. I can't imagine how cancer patients cope on 1000-5000mg dosages because I feel pretty wiped out for 2 days when I take it, but at least it has an actual effect rather than the pred which is just masking things.
I have just started a cleanse called ATP Gutright which is supposed to help with AI symptoms so will let you know how it goes. If you can get in a spa and do gentle mobility exercises I found that super helpful too once I was up to it. Wishing all the best for your recovery. Stay positive and take care 🤗
peter01292 BecsKoAhau
Posted
I have been asking my doctor (begging would be more correct) for a TNF-blocker instead of Metorexate, but he says they are a last resort both because they are expensive and also because the research is so far lacking for using them with ReA, so I will have too prepare for the side effects of Metotrexate - I have seen a friend go through it with AS. But after 2 months without beeing able to walk I am pretty much willing to do whatever it takes.
Thank you so much for the tip on dosing... i suspect my condition will require a proper dose, my knee is looking horrible.
Take care, and thank’s again for the encouragement and advice