My One Year Update with RA

[Hessie5]

Hello - I wanted to provide a one year update to the community. Sorry for my lack of postings, my Rheumo advised to avoid forums and googling as he felt it distracted my journey somewhat! I vowed a year on to get back to posting. So here goes.

I am still on mtx and hydroxy, I have been somewhat naughty, reduced my doses from 8 x tabs to 6 x tabs. As well as my Hydroxy from 2 a day to 1 then adhoc. This was due to the mouth ulcers, stomach, burning sensations and discomfort I was feeling. I changed my eating avoiding gluten, dairy. I consume mainly nuts, fish, fruits and veg. My blood markers are down. That said, he is still concerned with the inflammation in my right foot that is still active. My RA is focused mainly there, with joint damage. I must add I do not experience the swelling some of you seem to have. I just have pain that jumps. So mainly good days and the odd flare day.

Overall, no matter how I feel I remain upbeat most of the time.

Come January My consultant has placed me on the biologic Entracept. I confess I am very reluctant (not one for injections) - however, my consultant has reassured me it is the way forward with RA as it is a targeted treatment. I shall certainly let you know my journey with this biologic. If I am not happy I certainly shall not continue as it is a stronger drug compared to mtx, that concerns me.

I certainly hope my journey helps some of you on this forum. Feel free to reach out if you have any questions or advice.

Wishing you all a wonderful Christmas. 😊

[Izzyowl]

Hi Hessie, I am also on the combination of Methotrexate and Hydroxychloroquine but yet again I've got an infection so having to have another break for antibiotics. I wonder whether the risk of infection is higher or lower on the Biologics ? The Methotrexate works wonders on my RA but the effect on my immune system scares me.

[wishbone in reply to Izzyowl]

I believe the risk of infection is higher with biologics, at least that's what the orthopaedic consultant I was under thinks.

A couple of years ago I was admitted to hospital with septic arthritis in my hip..ouch!! I have a chronic bladder condition and was suffering with recurring urinary tract infections at the time. I was also on enbrel. The consultant told me that I should stop taking it as he believed enbrel was the main reason why a bug from a recent UTI had managed to get into my bloodstream, and I should ask my rheumatologist about alternative medication the next time I see her. I think he must have wrote a letter to my rheumy as one of the first things she said was I could no longer take enbrel, and didn't think it wise to go on any type of biologic.

To keep a very long story short... following another bout of sepsis, I was on methotrexate this time, it was decided that it was best for me to stop immune suppressing meds altogether because of the high risk of getting sepsis again. I stopped taking methotrexate over a year ago now and haven't had a single UTI since...would have had at least two, probably three during that time period if I was taking immune suppressors. Neither can I take steroids as they also suppress the immune system.

[MLC1972 in reply to wishbone]

Are you off all meds now? How are you doing?

[Hessie5 in reply to wishbone]

Hi Wishbone, thanks for update. Yes, do share what you are doing now. I know everyone is different with meds. If you are on meds which ones ? Or are you doing this through diet ?

[wishbone in reply to Hessie5]

I have cut back on red meat and eat a lot more fish. Not sure if it makes much difference though. I also have a regular manuka honey nightcap, which is supposed to be good for UTIs. Difficult to say if it's helping any as I started taking it around the same time as I stopped immune suppressors. I've also had bladder stones removed which can also be a source of infection, but I was getting regular UTIs, and had sepsis, well before the stones had formed. I'm pretty sure, as is my rheumy, that stopping immune suppressing meds is the main reason for the absence of UTIs. That said, I won't stop the manuka honey as it may be playing its part, plus it tastes very nice.

edit...I've had RA for 15 years.

[Hessie5 in reply to Izzyowl]

Hi Izzy - I heard there is indeed a higher risk of infection and secundary disease, hence my reluctance. I am thinking if I ensure my immune system is kept up to a good level, through vitamins, food etc it may just balance things out. The MTX and hydroxy is effective but alas the inflammation is still in my right foot! my consultant believes this really is the way for me. I shall give it a go, and post in my feedback. My best, Hessie.

[wishbone]

I can take hydroxychloroquine, which according to my rheumy is a relatively mild med and has very little effect on the immune system. It does help, but is much less effective than proper meds, especially enbrel which worked wonders for me. I also take tramadol and paracetomol on a regular basis. I can take the odd naproxen, but due to acid reflux have to be very careful and hold off taking one until I'm having a really bad flare.

Life certainly ain't easy with my RA but I'm more than willing to put up with that if it means there's less chance of getting sepsis again. The first time I had it (the septic hip episode) was really scary...I was not in a good place at all and had to stay in hospital for 10 days.

[popsmith1874]

Hi I can sympathise with you on the sepsis thing, in May I was in Hospital to get my Gallbladder out and ended up with Sepsis and an ecoli bug which kept me in hospital for 10 days and 4 off them I didn't even recognise my family as I was out of it, I'm just getting over another chest infection and I believe it's because I'm on Benepali and Methetrexate so I'm monitoring it and anymore problems I'm coming off them xxx

[wishbone in reply to popsmith1874]

Hiya popsmith, it's an e.coli type bug that's giving me trouble. Apparently e. coli is one of the problem bugs that's showing stubborn resistance to antibiotics as we've both found out by the seem! The usual suspect that I get has become resistant to all of the common antibiotics that a GP can prescribe, which means that I have to go straight into hospital for strong IVAs should I get any symptoms. What I found rather worrying was how quick my bug became resistant to each of the common antibiotics, and it's not as if I'd taken lots of antibiotics throughout my life...think I'd been prescribed them on no more than 3 occasions prior to having this bladder condition, which I've had for approx 3 years.

Your condition obviously differs from mine, but if you continue to have problems with recurring infections then it might be a good idea to have a chat with your rheumy about trying something different... I was surprised by how hydroxy seems to have helped me. Maybe you could ask about stopping one of your current meds and replace it with hydroxy, which will have far less of a negative effect on your immune system enabling it to have a better chance of fending off infections as it appears to have done for me. Future food for thought perhaps.

Stopping my RA meds hasn't come without its own heavy baggage as my RA is a lot worse than when I was on even just methotrexate. Despite that, plus the increased risk of the serious damage that uncontrolled RA can do to the body, I'm taking my chances of going without meds as that sepsis thing really scares the hell out of me. Not an easy decision though...talk about being between a rock and a hard place! A seriously nasty disease this RD can be for some of us!

Hope things improve for you.

[Izzyowl]

It is so useful to read these responses about infection risk associated with different med groups. Thankyou. I might be more cautious now in my discussions with my Rheumy about options. It is so frustrating because MTX is like a wonder drug for my Arthritis but I wish it didn't supress the immune system to such an extent.