Recently diagnosed with RA.

[Kellybean71]

Hi all my name is Kelly. I was recently diagnosed with RA. I’m not on any meds at the moment due to side effects of sulfasalazine. I feel like I get reoccurring flu symptoms and/or strep throat. It goes away and I feel fine for a while but then it comes back. sometimes it goes away and comes back a few times a day. Im missing out on so much because I constantly feel as if I’m coming down with something contagious But could this be RA? Thanks for any info/help I can get

[Alondoner]

Hi Kelly, I was diagnosed two years ago and the meds at the beginning do make you feel pretty rubbish. I felt exhausted and like I was always coming down with something. They do obviously lower your immune system so I had to change my lifestyle a little bit. I had a very chilled first few months on meds, really cut Bck on booze and slept a lot. But you dont need t be a hermit forever!! It just takes a few months to get used to them. Stick at it, get lots of sleep and it will be worth it!

[Kellybean71 in reply to Alondoner]

Thank you for the encouraging words. I’ll stick with it and hope for the best.

[oldtimer]

Many people find that they feel as if they are going down with the flu when they have a flare - or just when their condition gets a bit worse. If you think about the process of Rheumatoid Disease - your immune system is busy attacking your joints (and sometimes other bits of you) in the same sort of way that your immune system attacks intruding viruses or bacteria. So it's not surprising that you often feel much the same.

[Kellybean71 in reply to oldtimer]

Thank you for the reply. It’s not the flu. I needed some confirmation before I was willing to spend time with my family and friends. Thanks so much. I’m off to see the grandkids now

[nomoreheels]

Hiya Kelly, welcome. I also had to stop taking sulfasalazine, not because of the reasons you give though. It was the third DMARD I tried & it was as double therapy with methotrexate.

Your symptoms/side effects I find a little odd, if I expand. Of all the DMARDs, SSZ is the only regularly prescribed one based on an antibiotic, which to my unmedically trained mind would actually help your strep throat over causing them. It's two main components are sulfapyridine (a sulfonomide antibacterial med or antibiotic) & aminosalicylic acid. Just it seems odd & I am wondering if you are actually having them in spite of having taken SSZ, it's the time of year for it & if your reserves are low, as they're bound to be being newly diagnosed, & on nothing to help the disease.

There is also the consideration you may be allergic to sulfonomide meds. Swelling of the throat & a rash are common ones if they sound familiar?

Feeling as though you have flu is a common description prior to diagnosis so could be that’s due to not being on anything to help control the disease at the mo. You'll never have felt the help that the meds can give I wouldn't think so it wouldn’t be unusual to be feeling a bit rubbish anyhow.

Can I ask, has your Rheumy stopped your SSZ & waiting for symptoms to subside before prescribing a different DMARD? It seems to be a bit of a cycle you're finding yourself in which hopefully should stop once you're in treatment that suits. You aren’t in any other meds or alternative meds such as supplements, Vitamins etc are you? Just another train of thought.

[Kellybean71 in reply to nomoreheels]

Hi nomoreheels I don’t think I explain my situation very well. I was on sulfasalazine and a supplement called N acetyl cysteine along side it. The side effects that I had, I believe were from the supplement not the SSZ. It caused burning in my stomach and in my throat. I could feel it instantly after taking the supplement. The doctor took me off of both the SSZ and the supplement. It’s been a few weeks since I’ve been off of it. My rheumatologist said I should call and make an appointment when I was in pain again. I haven’t been having much joint pain. My problem is that I keep getting flu symptoms and a very sore throat. It will go away for a few hours or even a few days but It seems to keep coming back. I would really like to know if it’s the RA because I’m always afraid that I’m contagious and I miss out on so much because of it. Is this normal for RA?

[stbernhard]

Hi Kelly, I'd advise that you have a read on the NRAS website about medications, Fatigue and how to deal with it. Fatigue often causes flu like symptoms. RA and fatigue go hand in hand at the beginning for most of us. All the best.

[Kellybean71 in reply to stbernhard]

I will do that. Thank you

[Sandy-]

Hi Kelly

I’ve just stopped Sulfasalazine which I started early August. It doesn’t seem to have helped and I also get flu like symptoms and before stopping woke up each day with a sore throat. My first DMARD was Hydroxychloroquine which was reduced to 3 a week because of eye concerns. I have taken Carbocisteine for my bronchiectasis for at least 5 years without side effects, which I think is similar to your supplement,

I’ve had 4 steroid injections this year (only started last October soon after my flu injection). My last one didn’t really help and I’ve just completed 5 days Prednisolone which has given me an appetite thankfully as I only weigh around 7 stone. My last ESR was around 97 and CRP around 196.

I have my monitoring bloods on Friday and will wait input from rheumatology nurses.

Hoping we both get something that’s works for us.

Take care x

[Leics]

I know it’s silly but did they try you on salazopyrin which is an enteric coated version of sulfasalzine ? Generally people who have issues with their stomach or taking anything which is kind of aspirin based or sulphonamide’s have less of a problem with this version of the drug. I cannot take anti inflammatory’s because they’re aspirin based but I was able to tolerate salazopyrin for about 3 years. It was great in the early stages of my RA journey but then I became intolerant to it and ended up with hives etc. I know the enteric coated one was more expensive so that may be a factor. Although I cannot remember having a sore throat with it or flu like symptoms but my RA was raging so I did suffer terribly with pain and fatigue it still enabled me to walk and the stiffness was better. I didn’t get to the stage of remission but all in all I would say it was pretty good.

[nomoreheels in reply to Leics]

Salazopyrin is just a brand of SSZ made by Pfizer Leics, available in both enteric & non enteric coated tablets so not guaranteed to get enteric coated by asking for the brand. Best to just ask for enteric coated if they're not already prescribed, they usually are as the norm though.

[alfie21]

Google Clint Paddison , he has thousands of testimonials of people who have reversed their RA with diet alone. Within a couple of weeks you can be pain free again I have done it.

[helixhelix in reply to alfie21]

And hundreds of thousands where it hasn’t worked. I fully support people making lifestyle changes to help control their RA (I did myself) but for most it really isn’t enough. And if you have aggressive onset RA then you may not have time to experiment. The most successful stories seem to be people who have used conventional and alternative approaches in parallel, and then slowly weaned off drugs once they got the disease controlled.