Flare: Good evening everyone, I recently added a post... - NRAS

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WiltonT profile image
11 Replies

Good evening everyone, I recently added a post about being prescribed hydroxychloroquine to take alongside my methotrexate...I started the new tablets on Friday and last night and today I feel every joint has pain, swelling and heat! Is this normal when adding a new DMARD?

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WiltonT profile image
WiltonT
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11 Replies
popsmith1874 profile image
popsmith1874

It's a hard question to answer I'm on the same medication plus methetrexate and I'm no better and I've decided too go with no dmards now until I go onto Biologics which I'm waiting for ,I've had a steroid injection which should see me through. Everybody's different so you've got to give it time to work but I've been on this combination for 6 months now and I ain't doing it no more

WiltonT profile image
WiltonT in reply topopsmith1874

I sometimes think I can feel a difference then as quick as I say it I'm feeling awful again...I've been taking methotrexate since the end of December last year and I know it's still early days but I'm like you I don't feel much has changed....I'm seronegative and to date my inflammation levels are still the same as they were 6 months ago!

popsmith1874 profile image
popsmith1874 in reply toWiltonT

Hi same with me I'm seronegative and had RA and OA since 2014 and things are no better hope the drugs take affect soon

in reply toWiltonT

I understand what you feel as I sometimes think I can feel a difference then, wham bam, I'm in pain again. I'm so done with this freakin' disease.

nomoreheels profile image
nomoreheels

I'm sorry you're not too good. I can't say I'm in full flare but we've had humidity & my joints know it! Like you I've recently had another DMARD added & it is doing diddly squat but I'm a few weeks ahead of you & because of side effects I've had to halve the dose so little wonder.

Like MTX it does take a little while for HCQ to reach it's potential so you won't be responding to it just yet. I would think it's been added because MTX isn't tackling disease activity? It's likely the pain & inflammation is not so much a reaction to the HCQ (if that's what you're thinking) but that you're not controlled well enough. As you're also relatively new to MTX & now HCQ it's a case of getting the two working together so maybe coincidental, by that I mean you're not near being controlled so inflammation is rising to the surface.

If the inflammation & pain persists I'd ring your Rheumy helpline to let your nurse know, or if you're not already prescribed one maybe your GP would prescribed an NSAID to ease things whilst waiting for the HCQ to work. In the meantime you could try hot or cold on your worst affected joints, whichever you find helps.

It can be difficult in the early stages of treatment, finding the meds which help. I was prescribed HCQ first & then MTX was added but unfortunately that didn't help. This was well over a year following diagnosis so as you see quite normal to try different therapies before suitable ones found to get to being reasonably well controlled. ;)

WiltonT profile image
WiltonT in reply tonomoreheels

Thank you, I had a steroid injection last week while at the rhuemy nurse, I will give it another few days and if I'm still the same I will give him a call. X

nomoreheels profile image
nomoreheels in reply toWiltonT

Well, generally steroid injections relieve things by a couple of days after though can sometimes be longer. If it'll be a week or more since you had it when you'll be ringing your nurse, stating the obvious here but it may not have worked.

MarshaM profile image
MarshaM

I was Diagnosed in 2013. In March of 2014 My RA Dr put me on a 30day Prednizone after I had been on Mtx and HCQ for 4 months with no relief. After the 30day Pred, all the inflammation was gone and it seems like the Mtx and Hcq finally kicked in. Dr also put me on Humira in May 2014 because she said I had a particularly aggressive form of RA. Starting this yr 2016, Dr has started to reduce dosage of Mtx. I'm down from 8pills MTX a week to 6pills. I also take 1 Hcq daily and Humira injection every 2 weeks plus Folic acid. I'm thankful my Dr found the right cocktail for me but I am always wondering when it's going to stop working. Everyone is different so I hope you find what works for you.

Leonwp profile image
Leonwp

Its sounds to me that in your case unlike MarshaM the right combination hasnt been found. I went through many months, in fact over 2 years before a status quo was found, steroid jabs did work for me almost instantly, but only for a few days and when ive read how the jabs have worked for "a month or more" it is hard to surpress my envy. Of course all of us are delighted when someone else gets relief and no one with this evil disease would wish it on anyone, but there are days of "why not me?!". Everyone here is right, absolutely right, about there own disease, the advice your being given is invaluable because if you find one thing that works then you are blessed. Absolutely everyone has had different experiences with the disease, with meds and how it has changed their lives, some are "lucky", (thats not a term i often associate with RA), some are giving the devil a piggy back and unfortunately their lives can be hell.

Learn everything you can about the disease from these wonderful people and adapt what is appropriate for you. I have come to think of it like baking a cake, we are all given more or less the same ingredients, some dont read the recipe and they get a reasonable result, others follow everything to the letter and still 6 bakers get 6 different results, but you adjust slightly each time and you learn and hopefully refine your recipe for what works. Very much the same with RA, you may have to decide if, for you a day out is ok because it will only give you an evening of discomfort or like some poor souls here lay you up for a week. Some people here end up with Mary Berry standard cakes beautifully iced, others like me are still trying to get an omlette right, and if you only manage to make wonderful omlettes may be thats "your best". Good luck WiltonT. Dont stop trying.

Mandalou profile image
Mandalou in reply toLeonwp

Bless you Leonwp

Your Mary Berry analogy has me smiling here.

What a lovely post.

Good luck to you and I bet your real omelettes aint too bad!

Mx

kt11 profile image
kt11

Hiya, I have been taking hdrxycl for years and felt ok till I was given the cheaper version called quinoric which made me feel ill, I asked if I could revert back to hydroxychloroquin sulfate , since then I've had no reaction, I don't know if this is relevent to you, but I hope you feel better ver soon xxx

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