NRAS

Any Advice please!!?

Hello,

My wife was recently in hospital with septic arthritis in her shoulder. She's was discharged after having iv antibiotics and is now taking oral antibiotics which seem to be responding well, and she's being closely monitored with weekly blood tests and me taking her temperature!!

She has been on anti tnf embrel for the past 10 years but has now been told that she cannot take it because of the infection risk etc . In 6 months time her Rheumatologist has said that she will have to get on to a new anti tnf.

Obviously not being able to take what seems to be for her a "wonder drug" that has allowed her to carry on her life , is a massive problem and I can see how this is causing her major problems at the moment with flare ups. She's 32 years old!

This weekend we had our wedding which was wonderful but now she seems to be paying the price of being on her feet quite a bit , she has had the most crippling flare ups in the evening restricting her movement.

Thankfully her Prednisolone and pain killers seem to be helping her during the day!

I was wondering whether anybody else has had this experience of being taken off an anti tnf for a period of time and how they have coped / is there anything that helped in the meanwhile?

I think the stress of our wedding may have played a part in causing flare ups so I'm hoping now it's over she will be able to relax and that will help.

I feel quite helpless watching her in pain and I know she's very down at the thought of not being able to have any anti tnf for 6 months , so I'm providing lots of hot pads and shots of ginger and tumeric ..... does ginger / tumeric actually help?!

Any help or advice would be gratefully received at this rather testing time and any positive stories that I can pass on to her I know will help,

Many Thanks in advance .

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Hi Binkerboy,

I am so saddened by your very touching story. Weddings are wonderful events, but they bring tension as well as joy. Hope tinged with worrying questions about will all those carefully made plans fall into place? It is probably understandable that your wife did far more than usual during the run up to the Wedding and you may well be right that all the effort and excitement has at least in part been responsible for the flare.

My situation is very different from your Wife's. It is my wish that what I say will be helpful and encouraging. My RA was diagnosed in 2006 and it was not until 2014 that we found a biological which I could tolerate and which produced wonderful blood results showing that, for the first time, my disease was controlled. Due to problems with bacterial and yeast infections it is now 22 weeks since I had my biological infusion.

At first I was very anxious and could not wait for my infections to clear, so I could restart my infusions. Every 4 weeks I have bloods done and yes the ESR blood results are gradually climbing. My physical abilities have remained much the same, but my sense of well being and my energy levels, together with my mental health has just gone from strength to strength during the period I have been off the biological. My pain levels have remained much the same.

I have an appointment with my Rheumy at the end of the month. Initially I wanted to be back on my infusions as soon as possible, but having tasted life without them I now want to stay off the biological for as long as possible, that is, as long as my disease does not become active enough to be causing joint damage.

What am I doing to manage my condition without any prescribed meds.? Well I started weaning myself off my 10 monthly prescriptions in the Autumn of 2015, so I have been at this a long time. In the summer of 2016 I began reading about my Microbiome and the importance of Gut Health. I gradually changed my diet significantly and added additional nutritional supplements to what I had been taking for ages.

I think the Turmeric helps as an anti-inflammatory, but I take very large doses of Vit D3 which also is supposed to be anti-inflammatory. I also swear by my Krill Oil and lots of Vit C in addition to a good muiti vit.

If you want more detail I have put up two posts in the last couple of weeks, which developed into long threads. The first was "Some Words of Encouragment. Severe RA and No Meds. Right Now. The Benefits of a Healthier Microbiome." As part of the thread I included a long list of books. Someone asked me to put this up as a separate post to make it easier to find so there is a second post called "Microbiome Book List."

If you have any questions, please come back either to the Forum as a whole, or to me.

May you find the way forward that works both in the immediate future and in the longer term.

I do hope something of this is helpful and I wish you a long and Happy Marriage. Your wife is lucky to have your love, care, consideration and all round support.

Wishing you both well.

AARA

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Thank you!

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Sorry I don't have any experience in this, but just wanted to say congratulations on your wedding! I really hope your wife gets some relief soon. All the very best of luck to both of you for your future together. Mhairi

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What a lovely man you are to be so considerate of your wife's pain. I can't comment on anti-tnf as i don't take it.You say you don't know how to help her well you are doing by what your doing. Do all the heavy stuff and make sure she ges plenty of rest.xxx

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I understand how she feels (I'm 36) and Enbrel was my wonder drug at first. It only worked for me for 2 1/2 years before the effects started to wear off. I had gone back into teaching at a school and caught everything and had chest infections which meant stopping and starting the Enbrel and it therefore stopped working properly. I was moved on to Humira which is also anti tnf and worked well for me. It sounds like you are already doing lots to help her through the pain. I'm very sceptical about diets, turmeric, aloe Vera etc as things that work to help controlling RA. I tried changing my diet when I was first diagnosed (at 14) and it didn't help my arthritis and just made me miserable which isn't helpful to RA. She could consider something like amitriptyline which is used to treat pain and as it is also an antidepressant would lift her mood. Good luck and congratulations on your marriage. 😊

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Thank you!

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If a prosthetic joint gets infected, certain drugs have to be stopped to help the patient fight the infection. I had a similar problem in 2009 when my fist THR became infected two months post op. I had to stop MTX and was taking IV antibiotics for 16 weeks in hospital then oral antibiotics at home. I was in agony and given oxycodone but it only took the edge off the pain.

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Hi there,

I, too, am saddened to hear this.

The only thing I can add is to ask your doctor if splitting the dose of prednisone 2/3rds in the morning and 1/3rd in the late afternoon is possible. Sometimes this helps those who have trouble in the later part of the day but sometimes it doesn't.

Make sure she takes her morning dose early. The earlier the better. Never after 9:00 a.m

Please don't split the dose without first asking her doctor his thoughts. Let him know that she is having trouble later in the day and he may suggest something else for her.

I wish you both the best. Congratulations on your wedding!

Lucy.

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Thank you Lucy

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Hi Binkyboy

Firstly, congratulations on your wedding and your new marriage. I wish you both a lifetime of happiness. Secondly, you sound like a lovely, caring husband and she is so very lucky to have you. I'm sorry you're starting off married life with her having a flare up.

I've been off my anti TNF medication for some months due to an infection that also hospitalised me and lung inflammation. I've also been put on steroids while I recover and while a decision is made about what will happen. It's been a really tough few months, so I have much empathy with your wife. If she is flaring, perhaps she needs her prednisolone dose reviewed. Unfortunately, the only this I've been able to do is just sit and ride it out, which is probably not what you want to hear. The main things that have kept me going are; heating pads, I've been resting lots, taking extra pain relief as required, hot baths, TENS machine and just trying to keep stress levels down.

I know it's hard but hopefully she will be able to get back on the right medication soon. Fingers crossed. 🤞🏻

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Thanks very much I hope you are doing better soon

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Sorry to hear about your wife. I can truly empathise as I've been through a similar thing.

I'm not the most articulate of folk at expressing myself in writing (wayward school days are to blame) :-) so please bare with me and let me know if you require any clarity...........

Approx 3 years ago I had septic arthritis in my right hip. It was the most painful experience I've ever been through, and believe me I've been through a few. Two bouts of surgery were required to clean out the infection followed by a week's stay in hospital on powerful IVAs. After leaving hospital approx 4 weeks of oral antibiotics were required to clear the infection. Like your wife, I too was on enbrel + MTX at the time, which was working wonders for me. I was also told to stop taking enbrel as my consultant reckoned it played a significant roll in allowing the bug (an e. coli type I believe) into my bloodstream. Apparently the bug originated from a UTI I had a week or two previous.

The above episode freaked me out, so after leaving hospital I stopped MTX as well for the fear of getting sepsis again, which I was told could happen. The following couple of weeks weren't too bad and I managed ok just taking pain killers. After that it was downhill all the way...enough to say that my RA went absolutely crazy, I was more or less housebound, and forced to go back on MTX a few months later. I wasn't on it for long though and had to stop taking it due to an RA related lung condition.

May I ask if your wife has another health condition, as I unfortunately do, that means she's at risk of recurring infections? If so, for the sake of me ramblin' on unnecesseraly, perhaps you can get back to me about it if you wish to. In any case, it goes without saying that she needs to have a serious talk with her rheumy to see what's the best course of action for her to take. Other than that the only advice I can offer, which again is probably stating the obvious, and that is to keep check that the sepsis doesn't recur after her current hospital tests have ended - taking her temp regularly might be a good thing.

As for my current condition minus any RA meds, though I do take hydroxy which is not very strong and is not an immune suppressor. Surprisingly perhaps, it does help me...at least I'm nothing like I was when I stopped taking any specialised RA meds and can get out of the house if not as much as I'd like to. I also take tramadol and paracetomol on a regular basis. Life is not easy by any means, but I'm keeping my chin up and getting by.

Take care and good luck to you both.

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Thank you so much for your reply. Thankfully my wife only seems to be suffering from the RA but I've noticed a connection with her being pre menstrual this week which may explain why her pain is more exacerbated perhaps?

Funny you should say about the temperature, I bought an in ear temperature thermometer the other day and have been keeping on top of that - it varies between 36.00 - 37.5 which I believe is okay as advised by an orthopaedic doctor.

We've left a message with the rheumatologist helpline and she is seeing her doctor tomorrow which is good.

Many thanks again for your reply and kind wishes.

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That's good to hear. Hopefully, it shouldn't be too difficult finding meds that suit her.

Take care

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