hydroxychloroquine

Hello, my name is Sue and I live in Canada. I was diagnoised with RA last November. My doctor started me on hydroxychloroquine right away. It's almost 6 months now and my hands are still swollen. I'm scared.

[sweetdreams1234]

Hi Sue.

I'm from Canada too.EdmontonAlberta.

I'm so sorry to hear of your diagnosis and to hear you're do scared.

I have RA as well along with a bunch of others. I just started using rubbing creams as well and they seem to be helping dome days.I have RA in. My left hand more dominant than the right and in my face from TMJ.

You'll find that you will get lots of support on this site and experience from others.

However we always recommend that you check with your GP for any questions or new symptoms of concern.

Welcome sue and I hope you get the relief you so deserve.

Thanks .sweetdreams1234.

Barb.

[Hidden in reply to sweetdreams1234]

Thank you for your kind reply. I hope you are doing well. I've made an appointment with my doctor to discuss my swelling fingers and hands. When I saw my doctor last November, I was led to believe that I had a mild form of RA. I naively thought hydroxy was the "cure" to put everyone in remission... I guess I got a lot to learn. Take care

[craigsif]

Hi Sue relax deep breaths! Your frightened that's normal lots of horror story's float around about RA and the drugs used to treat RA. Bramm stoker would have some lovely stories for his fright nightxx. This site has a great deal of knowledge and a wealth of brilliant people who will help and advise you no end. Don't be afraid as your not alone, xx

[Hidden in reply to craigsif]

Yes, there are a lot of horror stories out there. I naively thought hydroxy was a new drug to put everyones RA in remission. Boy have I got alot to learn!!! Thanks for your words of advice Craigsif. Deep breaths

[Lloyd29]

Hi Sue,

Sorry to hear your in so much pain after taking Hydroxychloroquine for so long.

I'm from Cornwall in the UK and even though we have had some very warm unseasonal sunshine it still feels a bit damp and I suffer with my hands just like you.

When I started my HDC my Doctor put me on a 4 week courses of Prednisolone steroids . The kick start I had was very welcome. The results were great fully noticed.

I was also put on Methotrexate along with Lansoprazole (gastro-resistant capsules) for when tacking anti-inflammatory drugs.

Did your Doctor prescribe other meds, as I was told that sometimes HDC needs to work alongside other drugs. But the down side there can be side affects !

I hope you feel that your not alone and above all stay positive.

Best wishes, Lloyd

From sunny Cornwall

[Hidden in reply to Lloyd29]

Hi Lloyd, my doctor only prescribed hydroxy. He said it would put me in remission within 6 months because I had a mild form. I naively beleved him. I made a new appointment with him to ask more questions. I hope your RA is undercontrol. Thank you for your advice about other meds.

[angel-delight]

Hi Sue, my name is Sue too and I lived in Canada for about 25 yrs . I am now considering returning to Canada as my son and his family are there, plus I am now retired. I have had RA for about 20 yrs, it is frightening but like the others said you are not alone. This site is very helpful you will find people who have similar experiences. It is always best to check with your GP or if you have a Rheumy Clinic with a help line. I am hoping to return to Canada sometime next year if all goes well with the medical side of things. I didn't have RA when I lived there before so I need to check if I will be able to find a specialist in the area. In the UK, the NHS is really good and I haven't had to pay for my biologic medications. I have spoken to several people on here who live in Canada who have been very helpful also. Welcome to this site and I am sure you will find it to be very helpful and supportive too. Take care, Sue

[Hidden in reply to angel-delight]

Canada does have a good medical system. Though I've heard the UK has the best. I have a Rheumy. I like him, but I just have to open my mouth and ask questions..I was stunned when I was diagnoised and just sat on the exam table with my mouth hanging wide open. I often think back to that day and wonder why I was so silent?

[angel-delight in reply to Hidden]

Hi Sue, The NHS has been good to me and I am pleased to hear that you have really good medical system in Canada with a good rheumy consultant. You have put my mind at ease. I have a doctor friend in Toronto, he works in a pain clinic I am going to try and have a word with him if I make it over later this year. I am waiting to start on a new biologics medication. I am seeing a respiratory nurse next week for tests, if they go ok, I will be able to start on the new medication and hopefully the swelling in my hand's, wrists and legs will go down and I will be able to fly. If I do go back to live in Canada, it will be in the Toronto suburb's with my son, daughter-inlaw and two granddaughters. I really do miss them. Good luck with sorting out your meds, and keep in touch and let me know how you get on. Take care, Sue

[Hidden in reply to angel-delight]

I'm glad I was able to put your mind at ease about Canada's medical system. My fingers are crossed about your upcoming tests. You must be excited to move close to your grandchildren ( your son and daughter in law too...lol)!! My kids are 23 and 19 so I have afew more years to wait to become a grandma, but I know I would want to live near them. I live outside of Vancouver BC. Yes, lets keep in touch

Take care, Sue

[angel-delight in reply to Hidden]

Hi, I have a friend who moved from Toronto to Vancouver soon after I returned to the UK. I am really hoping I can sort things so that I can come back to be with my son and family. My grand-daughters are identical twins aged 9 and they are my little angels. I miss them all so you can imagine I am hoping to see them soon. I have two sisters here in the UK so I always feel I am pulled in both directions. I have felt a little better over the last 2 weeks and I think it is the warmer weather plus my consultant increased my steroid medication to 20mg until I can get on the Tocilizumab infusion to start with then injections soon afterwards.

I also have a friend in Calgary and the last I heard they still have a lot of snow. I will keep in touch and let you know how I get on at the end of the month tests.

Take care, Sue

[farm123]

I think you need to have a discussion with your medical team as you have given the hydroxy plenty of time to work and it has not yet controlled your symptoms. Farm

[Hidden in reply to farm123]

Yes I have given hydroxy plenty of time to control my symptoms. Thanks for your advice. I have just made a new appointment with my rheumy.

[Jora]

As Farm says, it really sounds as if the Hydroxy alone is not enough for you. You do need to speak to the team, so that you can get the RA under control.

I understand you are scared. It takes a bit off getting used to, but you will find a lot of support on this site. Eventually, you will become your own expert. Although we all have a lot of common, the disease process is different as is the response to medication.

Good luck, and be comforted. Jora x

[Hidden in reply to Jora]

Yes it does take a bit of getting used to, and I am humbled at the support I found on this site. It's time to "pull up my socks " and start educating myself about RA. I naively thought hydroxy was a new pill that puts RA in remission...boy have I got a lot of learning to do!! Thanks for your kind words Jora. I hope you are having a good day

[hatshepsut]

Not much to add to the previous comments, but would recommend the advice to contact your doctor. I think it's true that all of us are, or have been,scared, but knowledge is a great weapon against fear, and you'll find lots of that here, and plenty of support. Do keep in touch. M x

[Hidden in reply to hatshepsut]

I have always been the type of person who would research everything, but for some reason I put my head in the sand on this RA. Knowledge is power and it is time for me to educate myself. Thanks for your advice.

[orchidcass77]

Yes inform Dr or rheumy the hydroxy is not helping. Really just wanted to pass on well wishes. Its very scary but we are all here alongside you. Good luck in finding the right treatment for you

[Hidden in reply to orchidcass77]

Thank you. I wish you well

[sunilbabu99]

I have been diagonized with intial stages of Sjorgen's. My doc prescribed Hydrocloroquinie. I wanted to try alternate medicines first. It has been working great. I also use zyflamend natual anti-inflamatory as iam allergic to NSAID. This also is working for me.

[Hidden in reply to sunilbabu99]

I never head of zyfamend. Time for me to do some research. Thanks for your advice. I wish you well

[Mall]

Hi Sue, I was very scared when I first was diagnosed, a lot of my fear was due to lack of information about the disease and through being treated by local generic medics for a couple of years before I insisted on being referred to a rheumatologist. I live in rural Scotland and my nearest rheumy is 100 miles away, my GP thought she was doing me a favour by saving me the travelling time by referring me to the local hospital general physician; doh !,,, once I saw a rheumatologist my drug regime was tweeked and I have never looked back.

there is lots of good information on this site but bear in mind it is mainly UK folk on here and sometimes there a few drugs know by different names and other anomalies that may be different in Canada.

It does take time to sort out the best drugs to treat your disease, each persons needs are different, what suits some doesn't suit others. Seek advice from those best qualified, I had to really push to be referred to a rheumatologist and be patient, there are plenty more tried and tested drugs out there which can help bring your disease under control.

Best wishes

Mall

[Hidden in reply to Mall]

Hi Mall. 100 miles to the nearest rheumatologist Yikes!! But I have seen photos of Scotland and wow how beautiful !! It must be peaceful to live in rural Scotland, outside of the hustle and bustle of a big city. I live outside of Vancouver BC and am very lucky to be within 15 miles of a rheumatologist. I guess I was so stunned when I was diagnoised that I shut my mouth and let the doctor talk. My rheumy was asking me questions about aches and pains but I naively thought all the pain I was feeling was due to my job. I work in a warehouse and as a cashier. I played down my pain (not one of my brightest moments lol) I've made a new appointment and I am starting to right down questions to ask him. Knowledge is power and it's time to educate myself on this disease!! Thanks for your support. With all the support I have been recieving on this site I am feeling stronger

[abby1649]

Hi Sue. i joined this site in January 2015 Its a wealth of information and great support as its wonderful to know your not alone. At the first onset 2 years ago we thought we were dealing with RA. When I hit bottom they confirmed Lupus. Its been a struggle but with a good GP and Rheumy I am doing much better. I am still on hydroxychlorquine but also on Immuno suppressent and blood thinners. So far the combo works and I think we may look at reducing dosages to see if I remain stable. I see the Rheumy in 3 weeks for followup.

Take care and know you are not alone and keep us all posted.

[Hidden in reply to abby1649]

Thanks for your support. I wish you well

[Azabat]

Hi Sue, I'm another Canadian, and I got diagnosed at the same time as you! It's pretty scary stuff, so I'm not surprised you're feeling that way. I started on the same med plus methotrexate, and I just had another one added to my cocktail. If your hands are still swollen it probably means you need to talk to your rheumatologist (or gp) soonest. These medications do take time to work, and balancing the benefits against the side-effects is tricky. As for the scared...well, I've been a pianist most of my life, so I get that, too. Some days I cope well, and some days not so much. There are people here who have had amazing results from the medications, and some who are still struggling to find what works for them. In the meantime, let your doctor know both how swollen and how sore your hands still are.

Keep us posted - I have found simply having a place to speak my feelings incredibly helpful.

-Bat

[Hidden in reply to Azabat]

I am overwhelmed at the support I am recieving and am very grateful. Thanks for your kind words and advice. I wish you well

[Hidden]

6 months does seem long enough to test that drug out (I can never spell it). When's your next appointment?

I had very swollen knees and a swollen wrist for 3 years solid. They did get damaged, but I think that happened before I started on Mtx. The Mtx got rid of stiffness and pain too. I eventually found a rheumy who was not happy for me to continue walking around with knees like melons and started me on Humira which quickly banished swelling.

I think the main thing is to start on the drugs and you've already ticked that box. And the next thing is to get a bit assertive with your rheumy if he or she doesn't get in there first by suggesting another drug. It is about trial and error though and you are on that path so don't be scared.

[Hidden in reply to Hidden]

thank you.

[Mistydawn]

Hi Sue

I was diagnosed with RA in October 2014 and started on 200mg of HCQ (hydroxychloroquine) which was increased to 400mg in December 2014. I am not sure the HCQ is working for me either, my respite seems to have come from three localised steroid injections I had (one in October 2014 and two in December 2014) but it could be working but maybe not as efficiently as it would with the addition of another DMARD. I have now been advised to add MTX to the HCQ but as I am waiting for additional blood test results I have not started the MTX which I am hoping to start in the next couple of weeks or so

I had a massive flare up in early March 2015 but this was due a large amount of personal stress I was under for a week beforehand so I now try to remove myself from stressful situations as much as I possibly can and try to handle the ones I can't remove myself from differently though, of course the damage caused by the flare to the joints cannot be undone. I have changed my diet too and given up gluten containing foods, refined sugar and processed foods and increased the amounts of seeds and nuts I eat.

I too was scared when I was initially diagnosed as it felt like a life long 'sentence' but now with a little bit more knowledge and especially help and support from the lovely people on this site, I am accepting RD and less scared. I really want to avoid any more flares as much as I can because that scared me again.

Take care x

ps: I am in the UK

[Hidden]

Wow ...Is stress related to a RA? My elderly father was diagnoised with terminal cancer last October. My elderly mother didn't believe the oncologist, so she dragged my dying father on the bus to search for a miracle cure. The actions of my mother placed me under unbelievable stress!!

[Hidden in reply to Hidden]

I really need to speak to my rheumy about stress. Thankyou Mistydawn. I wish you well

[jan-ran]

Hi Sue, I was given hydroxy.... When I had a flare up of dermatomyositis. I was told it would help with the rash. It didn't, ever, and I stopped it a couple of years down the line. Maybe it just doesn't work for some people. Steroids never helped me either, tho I know they are standard treatment for auto- immune diseases. My saving medication was azathioprine. Don't be scared, sometimes it takes a bit of trial and error to find a suitable med, but I'm sure you will in due course. JanR

[brightangel]

Hi Sue , Sorry for your diagnoses (but you are in good Company if that helps lol).

Also, I can understand you're feeling scared, especially if you don't see an improvement.

I don't have much knowledge on the meds but I can only say as someone

who came on here first time a couple of days ago that it feels good to have

people in the same boat who can offer help and advice.

I am sure you will find it comforting and helpful to have that contact and support.

Be kind to yourself at this time. Smiley-face.

[Hidden]

I am so greatful for this site and the nice people who give advice. Thank you very much

[Linzerbenz]

I was not tolerant to this drug unfortunately. Sorry to hear you have been taking it for 6 months and it is still not helping. Don't fret though, these docs have many other options to try for you! I tried them all and am now starting Enbrel. Hang in there and good luck with your next drug. I wish you the best!

Lindsay