Hydroxychloroquine effectiveness ?Prodromal RA

[charlie9]

I was diagnosed with fibromyalgia in 2012, after many years of symptoms. These have changed more recently though. There is a strong history of RA in my family, new consultant thinks I may be in prodromal phase of RA. Bloods show normal anti ccp, CRP was 11. She put me on hydroxy 2 weeks ago (before the blood test - she was an out of area Dr so I have only just sent her the results from GP surgery she hasn't reviewed them yet- although the report says no action, but crp 11 seems raised especially if inflammation is what we're looking for? anyway...)

My questions really are:

Anyone else experience this sort of potential prodromal phase?

How quickly did you (regardless of prodromol or full on RA) notice an improvement on hydroxy? I know it can take a while but I wonder if some people have noticed some benefit sooner.

Can it help seronegative RA?

I do not know what will happen to me now regarding diagnosis but very interested to see others experience of early RA, RA and Fibro or experience with Hydroxy.

Many thanks for your time reading this!

[kkminton]

Same experience

It took awhile

3 mos with some improvement

Here I am a whole year later

RA, fibro,

Taking tinzanadine hydro and methotrexate

Feeling better and starting to show improvement

[charlie9 in reply to kkminton]

Thank you for replying. My symptoms are no longer classical fibro, she says may be both maybe just one or neither. But interesting you have been the same. I feel clearer in my head and all over pain is not so bad I think. May be coincidence especially as I don't often respond much to meds eg painkillers. Are you seronegative or positive? Glad you've had some help.

[charlie9]

its been 2 weeks and i do feel clearer headed and maybe a little better general pain wise. still pain but in more specific areas than everywhere. she said if they believed it was ra theyd want to start me on something stronger quickly to try halt it if they could. thank you for your reply very interesting

[nomoreheels]

Hiya charlie9 & welcome, though I'm sorry you've needed to seek us out. There is the thought RD can be genetic, sometimes skipping a generation & that's the case with me, my Nan had it. My RD (Rheumatoid Disease - same as RA but choose not to be lumped with the Arthritis tag) was caught early one month after initial symptoms so not quite the same as you. I'm seropositive & was initially treated with hydroxychloroquine, 200mg twice daily. It is one DMARD that's often prescribed initially for less erosive or less aggressive RD so that's possibly why it was chosen, my feet were the only affected joints at diagnosis. It does work for seronegative RD, all DMARDs do. It started working within the 12 week suggested time frame, difficult to say exactly when it started working because I was also prescribed a course of steroids & two NSAIDs too but it continued working for around a year. As the dose couldn't be increased (400mg daily is max dose for HCQ) Methotrexate was added & once that was working the HCQ was stopped. I remain on MTX 9 years later, at various doses, currently 20mg subcut, & generally do well. I have the odd hiccup, usually stress related, but that's RD for you! I've never been diagnosed with Fibromyalgia by the way but I do also have OA (diagnosed at the same time) & osteopenia/borderline osteoporosis, both are medicated.

It may not feel like it but it is a positive you're in the position you're in as early diagnosis can in some cases mean a better prognosis. Your CRP is relatively low so that's also a positive, though that may change in the near future whilst you're waiting for HCQ to do it's good work anyway.

Don't hesitate to ask if there's anything else you think we could help with. No need to hold back, there's no question too daft! 😋

[charlie9]

Thats loads of great info. It sounds weird but if it is RD at least I may be reviewed from time to time and can try meds that might ease it. For years I've been left to survive and basically given up a career and much of myself it feels like in order to be able to be a Mum and cope with life. I don't think my CRP is high but it's just above normal I believe I was kind of hopeful in a way that showed something was there? Not that I want to be bad just to prove something is going on. Or is a CRP of 11 not significant to consider RD? I am on diclofenac and cocodamol. Previously amitriptyline, gabapentin, came off both decided I would try manage my life better as they weren't really helping with the amount of pain killers I was still taking. Recently been put back on diclofenac, been on cocodamols for years. Mum has RA (since 17), her Granny had RA and she believes it goes further back too. GP wanted to try me on Pregablin but I was hesitant and went to see my mums rheumy for some support and she quickly said are we sure it's fibro because I am very at risk of RA. My mums bloods never show much going on even when she is properly swollen and having flares. I know there are many strains of RD. She said obviously I had done what I could to manage stress and adapt my life to manage and the recent severe flare 3 months after having my son is quite typical of RA. So she wanted to consider prodromal RA.

Thank you so much for your response. I've been trying to support my mum for years and now I'm thinking how I go about this myself!

[Hidden]

I was diagnosed 31 years ago with seronegative RA by my GP, who immediately referred me to a rheumatologist. I've never had Hydroxy. My first DMARD was Sulphasalazine which worked well for me. Then I got lost in the system, as my consltant emigrated but his replacement never gave me an appointment! Anyway, long story short. I'm now seropositive, have MTX, Leflunomide, Pred, Rituximab. Also have Osteoarthritis, Osteoporosis, Vasculitis, and Bronchiectasis. Never heard of "prodromol".

[charlie9 in reply to Hidden]

Prodromal is a period when symptoms may be there but before you fully develop the condition. It's coming basically. I believe it can naturally stop and pokes its ugly head up sometimes and but then stops or it develops and you get full on RA. I may have had transient prodromal RA for a while. If she suspects it then she wants to try and halt it as much as possible. New ways of looking at RA getting in there early. I paid privately to see her though as she's been great with my Mum and I was desperate for someone to at least listen and support me. GP is nice but it's very pointless and don't have time to think bigger picture sometimes do they.

[Hidden in reply to charlie9]

Ah, then I was prodomal from the age of 12.

[kkminton]

I have never heard the word prodromal. I will look it up

[kkminton]

Ahh this makes sense now... The symptoms during onset... mine go back awhile when I think of it. Very weird episodes that my GP could not quite pinpoint the root cause of. Felt like a hypochondriac since my mid forties! Started keeping it all to myself until things went south and my family began to notice.

I am glad you are getting help with this early, it makes a big difference! Stay active and take care of you!

[charlie9 in reply to kkminton]

Yeah it's been over a decade since I first started getting pain I wasn't happy with the severe lack of support and I wanted to be sure there wasn't more we could do. The recent flare had frightened me and I felt very low. My mum's rheumy also does private consultations so she's two hrs drive away but I was impressed how she was caring for my mum so bit the bullet and paid 160 to see her privately hoping to be referred now to her for NHS care. If it is what she thinks like you said good to try catch it early, thank goodness I went for it and didn't keep plodding on getting random pills thrown at me when I was desperate and actually saw a gp! Thank you for your feedback, yes big improvements now in how to manage early Ra I believe.

[BonnieT in reply to charlie9]

I’ve been having symptoms 20-30 yrs. doctors would tell me blood work showed autoimmune but they couldn’t pinpoint what. Just got diagnosed 4 months ago. I wonder if they had known early on, could it have been prevented from going total. Maybe it’s what we eat. Now on methotrexate. One day good, the next bad. Just walking is difficult. I guess the early years were promordal but it’s not a word I’ve ever heard before.

[wishbone]

I have seropositive RA and have been on hydroxy, plus strong pain relief, for the last two years. I can't say with certainty how long it took to start working as there were other health issues going on with me at the time, plus I started taking it immediately after coming off methotrexate. Compared to how I've been when I had to stop all RA meds due to complications, it is helping, but not to the same extent as methotrexate and enbrel was. I have a fairly aggressive form of RA and although the hydroxy has probably slowed down joint damage a little, my rheumy has recently put me on a new stronger med alongside the hydroxy as my joints do seem to have deteriorated faster this past two years.

If it works for you then all well and good as hydroxy is a relatively mild med hence less risk of side effects than other meds. If you think it's not helping much you can always start taking something stronger later on. Hydroxy can affect your eyes so you need to have them tested at least annually, though I expect you've been told about this.

Good luck.