Hello, recently diagnosed, July 2017, have RA in hands, wrists, feet and prescribed Hyrdroxychloroquine sulfate 400mg per day. Awful side effects, severe stomach cramps and my immune system is so low keep picking up coughs and colds. Was advised to use Buscopan for as long as needed, it works!! Got it down to 2 tablets first thing in the morning with a glass of water, before I eat anything. I also take Omeprazole for a stomach problem, so worried about the effect of the HS on this, but found if I take Omeprazole at breakfast and HS as lunchtime it doesn't upset the tummy. I have also noticed that my hands are continually cold, I've always been the opposite, never felt the cold. The flare ups cause chaos for work, I have to drive, I'm an Environmental, Health and Safety Coordinator, work have been fantastic, provided everything possible including DragonNatural Speaking on my computer, so I talk and it types... wonderful. I do find I'm very tired and low, prone to crying at the slightest thing, but I presume its all part and parcel of this disease. How does everyone cope? I love to bake, garden, sew and finding it difficult.
Angji
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Angji
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Hiya Angji, welcome. Be assured your experience isn't unusual, the majority felt as you do when first diagnosed. It can take a while to get used to the regime but it does improve, honest. Hydroxychloroquine was my first DMARD. 400mg daily the same, & whilst it worked for a year that first year was a bit up & down though I have to say mostly up. HCQ isn't overly immunosuppressive so maybe being run down & the advent of RD was more the reason for coughs & colds, that said who wants those?! I found the longer I was on HCQ the less the tummy side effects were but it caused light sensitivity which in turn caused dry eyes & increased migraines so that & it becoming less effective was the end of it for me. I used to take my dose separately, 200mg in the morning with breakfast & 200mg in the evening with dinner, don't know if this would help ease your tum problems? It was a while ago, 9 years, & since I've been on another 3 DMARDs but the one that has been longest serving at 8 years is methotrexate.
Re omeprazole & HCQ, you're by default doing the correct thing because it's advised the two aren't taken together, leaving 4 hours is suggested I think.
Some do find they're cold but others, like me, are hot, there doesn't seem to be one rule for temp, excepting joints that is, they're hot when being troublesome. The only exception are my feet but my electric foot warmer comes in very handy!
I hope you enjoy being here with us. If you have any questions don't hesitate to ask, we've lots of experience between us. 😊
It's the best thing ever for cold, inflamed & sore feet. Look out for Lidl having them, last year it was around the beginning of Dec., only around £13 which if you look around is a big saving.
Just as NMH says in their post it might be a good idea to split your dose. I was told to take 200mg in the morning after breakfast and 200mg after dinner.
I never ever take Hydroxy on an empty stomach.
I take Omaprezole too to protect my tummy and also take an antihistamine on prescription alongside the Hydroxy and as needed to combat the awful itch Hydroxy gives me.
I travel abroad a lot and always smile on my trips to Africs at the protective effect of Hydroxy as it is actually an anti malarial by design.
Good luck to you, think positive and look after your health generally. The first year is a very confusing time. Things will never be the same but you will find your new normal.
Thanks Mandala, I was advised to take the 400mg in one dose, as we caught the RA early he's hoping to keep it at this level, will find out at next visit after more x rays, have tried just taking 200mg but didn't have any effect so back up. Nice to know about the omprazole too. Take care
There is a vast maze of new terminology that will become second nature during your RA journey and the best piece of advice I can give you is to be completely in charge of your own test results and what they mean. In this way you can have some semblance of control in what most people here will tell you at diagnosis is a rather turbulent period.Would I be correct in thinking you are not in the UK!
I ask this as treatment pathways can differ from country to country though invariably we all end up on similar treatment sometimes the same drugs just with different names.
Sero-positive and Sero-negative refer to the presence of Rheumatoid factor in the blood.
Confusingly one can have a positive RF yet no symptoms of RA and equally test negative for RF but still be diagnosed with the disease. Sometimes the Rheumatoid Factor can develop over time or not at all.
The tests I'm sure you will have experienced to gain a diagnosis will have consisted most probably of an ESR ( Erythrocyte sedimentation rate) test and a CRP test. ( C reactive protein) These both test for inflammation , CRP being more specific.
You should have had an Anti cyclic citrunillated peptide test ( anti CCP) this test if positive can possibly identify the patients who are most likely to suffer the most debilitating damage and severe disease.
In your position I would be asking these questions from my primary health care provider.
Hi, I am in the UK, but have only seen the consultant twice, once when he sent me for tests and the next to confirm diagnosis, I have the Rheumatoid Factor and its very rapid onset, CRP was also high. I work in the Healthcare Industry, but still find it all confusing, perhaps I was in denial for a while and just waking up to it all now, dealing with it on a daily basis, really strange how you can be quite fine one day and wake up the next morning so stiff and in pain unbelievable.
I have yet to meet the rheumatology team, that's coming up in November and hopefully will get all the information then.
Thank you so much for the information, really do appreciate it.
You are more than welcome and there are always really knowledgeable people on here to help any time.
It is just so daunting isn't it. I hope you manage a fast remission and have a kind and sympathetic family and your Rheumatology team get you on the straight and narrow ASAP.
Same here. Only 8 weeks into diagnosis. Finding it hard to get out of bed, let alone do anything practical. Just awful. Hands and feet freezing. Have been using a hot water bottle every night since August!! Crying all the time too. Had terrible side effects with the hydroxychloroquine and they reduced it back down to 1 a day.
I received a handbook when first diagnosed, has a few exercises in, which I now do before I attempt to get out of bed, simple things like ankle rolls, stretching the foot/toes, knee/hip rolls, arms above head stretches, still stiff when I get out of bed, but they do help me to get going.
I too had bad side effects of hydroxy. I took it for a little over a year and it really didn't help with the RA pain. I kept getting flares. However, I think that I needed that time to make a dedicated effort to keep seeing doctors until they figured out what was wrong, instead of just being a guinea pig to their hunches.
I decided to stop taking it and the rheumatologist suggested that we go through a panel of xrays and mri again to see if any changes could be seen since I'm sero rh negative. They came back positive for changes. The doctor put me on methotrexate. It's been 2 months and while the first few weeks were tough, the side effects have lessened considerably and I'm starting to see some pain improvement too.
I'd say if the side effects get to be too much ask your medical team if there are other options that you can try.
As a side note, I've found that ginger ale and oatmeal (not together) are my friends on when taking medications. I drink ginger ale. I eat oatmeal as the meal before taking meds and as well as planning my medication to be at a time when I can be upright for at least an hour. Taking meds right before bed didn't work out for me, too much reflux.
I'm not sure about the Hydroxy, things seem to settle, then as you say, flare ups, I think I had two weeks of no symptoms and its all kicked back in, don't see the rheumy team until November, last seen early Aug!! I think its too long in between, but what do I know.
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Sorry another q. omeprazole and sulfasalazine 
Active RA!!!
