My First Day.

[TimCN]

Just joined and a bit like my first day at school, hoping to meet some nice people and make some friends (widowed young and now lonely). I've been diagnosed less than a year and had to come off Sulfasalazine due to Haemolysis. I've refused to take Methotrexate so Specialist has offered me hydroxychloroquin. Realise it's a bit of an outmoded antimalarial these days but has anyone got any personal experiences from taking this one? I've been 'getting by' on just taking tramadol which is pretty good for my pain control. Love to hear from anyone, please. Tim.

[sylvi]

Good morning Tim and welcome. I got a bit of a start as you look just like a friend of ours. Never mind, you have found a good lot of people who will have plenty of advice for you on this drug,i am just welcoming you to our group.xxx

[Caza]

Morning Tim, & welcome. I've been taking Hydroxychloroquine for almost three years now. I started on one a day after taking it for three weeks I then took two a day. I had a slight rash for about 48hrs but nothing to bad. I take one in the morning & one at night & always with food. I was told that it could affect my eyes & was advised to have an eye test before starting them & then every six to year, which I do & so far no problems. I find I'am more sun sensitive so tend to keep out of strong sun light & use lots of sun protection creams. It's been a life saver for me. I still get flares but theyre very far & few between now. I have had a few steroid injections when the goings got tough as cannot take painkillers. Hope this helps & I hope they work as well for you.

[TimCN in reply to Caza]

Hello Caza, thanks for you very useful reply. I'm wondering whether you take anything else other than steroids for your flare ups. You see I'm looking for someone like you who appears to get good results with just hydroxchloquine, although I've read, and others on this site have confirmed, that it is one of the least effective, lighter weight treatments for RA. That would suit me because I'm not one for going in with all guns blazing, as in multiple therapies. My real fear though with this one is it's potential for retinal damage, blindness in the worst case scenario. Of course eye tests are essential here but do you have tested at hospital or in the high street opticians? I can't see the likes of Specsavers having the necessary trained staff to know what they're looking for. I couldn't live without my eyesight

I hope you're still keeping on top of your symptoms. Regards, Tim

[nomoreheels in reply to TimCN]

Don't worry Tim, I can certainly speak for on behalf of Specsavers, they do have all necessary equipment, enough for your optometrist to pick up any changes & refer you if anything is untoward. This link explains the testing equipment used specsavers.co.uk/eye-health.... Most of the "big name" high street opticians have all the latest up to date equipment so not just the above.

Here in the UK if your Rheumy doesn't arrange your eye test in hospital you're advised to see an optician yearly & advise them you're on HCQ.

[Caza in reply to TimCN]

Morning Tim, I have been offered oral steroids but didn't want to take them. I've had a couple of steroid injections which helped enormously but lasted only for about five or six weeks. I somehow found it harder to go back to the stiffness & pain & wondered if the break was worth it. Of course my symptoms are nowhere near as bad as many of the folk on here & when I flare I must admit I'd take almost anything.

I cannot take the painkillers that were prescribed as they badly affect my stomach & I'm left in even more pain.

As for my eyes, my friend is an optician ( not her correct title but I can't think what it is) anyway, she has a number of clients on this drug & she has yet to see one who's had problems. She is of course aware that there can be but in her opinion it's rare. As for specs savers, I have a friend who has real problems with her eyes & she swears by them. Another friend went to tescos where they picked up on him having a serious eye condition which needed imedete treatment at an eye hospital. So I guess it's a case of ask around for recomendations & ask the right questions. I think all meds have side effects & you just have to weigh it up. Good luck.

[bigcatlover]

Welcome Tim. It's my 2nd day

[Hidden]

Welcome Tim, I have never taken your drug so have nothing to offer, just wanted to welcome you.

[Riedenise]

Hi Tim, welcome to our lovely site. I take Hydroxy, with Mtx & Sulfa too, & folic acid 3 times a week, Naproxen & paracetomol. I started the hydroxyl with the Mtx from day one 2 years ago when I got diagnosed. & added the sulfa 6 months later. I too had a horrible itchy rash with the Hydroxy but that soon subsided. & now no problems taking them or the others.You do have to have an eye test before taking & every 12 months, as it can affect your eyes. And has been said before, it can make you sun sensitive (as can other meds you take) so I always put at least factor 30 on when the sun is out.

Welcome x

[farm123]

Many years ago I started out on chloroquine before having my children. Over time I have been on various DMARDs which my body does not tolerate well, Anti-TNF and biologics, I have now come full circle back to hydroxychloroquine last year to try and help boost the biologic Abatacept. I can only tolerate 200mg daily but something within the combination of hydroxy and Abatacept seems to be working. It does not appear to create any problems for me but everybody is different and it can take some time to find the right combination of drugs that suit you. There is a section on the NRAS website that has more details on the different drugs. Farm

[michaelsminis]

Hi Tim, Nice to meet you. I started off on hydroxychloroquine before moving on through Sulfasalazine and MTX. For me it gave me stomach problems so I was moved off it, but that was more of a personal reaction as my stomach doesn't seem to be able to tolerate many medications. I did get more sensitive to the sun though and started burning very easily with little exposure so worth well keeping the sun screen topped up. However being in England that's not too much of an issue as we rarely seem to get much sun these days.

Michael

[allanah]

Hi and welcome. I felt very isolated when I first started using this site but now I feel like I have lots of virtual friends out there.

I haven't takes hydroxy but guess you are feeling quite rubbish .

Also that's awful sad about you losing your wife, it must be heartbreaking for you.

All I can think is if you go onto the nras website nras.org.co.uk they have loads of info on all the drugs and there is a helpline number. They will be able to tell you of groups in your area hopefully where u can meet others with RA and their friends and family. That might be good for you? Also they have regular conferences which are very good .

Good luck and keep posting .

[Carolsos]

Hello Tim, just wanted to welcome you to this brilliant site, its a life liner. Take care.

[petalnumber2]

Hello Tim,

Welcome to this site and some lovely kind helpful people.

I'm sorry to hear that you have lost your wife at such a young age and have been diagnosed with this life changing condition. Life has a way of coming up behind you and biting you on the bum, I know from my own experiences. However, it's good that you are reaching out to others.

I was put on hydroxychloroquine along with methotrexate when I was first diagnosed, but it caused me some tummy upsets too just like michaelsminis, so I wasn't on it for long.

I must say that in my experience all the drugs used to control rheumatoid and associated diseases have their side effects and it is a matter of weighing up the pain and crippling effects of the disease against whatever side effects involved with each drug. Methotrexate is very widely used as it seems to work very well.

I was 63 when diagnosed, if I was younger like you I might well have bucked against taking such strong drugs. Anyway, I wish you well and hope you soon get settled on a treatment which suits you and you are comfortable with. Take care, June x

[Someonesmother]

Hey Tim and welcome. I have been on hydroxy for about 15 months now. I ha a few headaches at first and they reduced the dose down which seemed to fix that problem. I am not sure it is doing anything for me, but I suppose if I went off it I may know for sure! hahaha Other s may have other experiences but so far so good for side effects wise, apart from not too sure if it works.

[Patsy-57]

Hi Tim,

Welcome. I found it effective when I first went on it then after about a year it became gradually less effective. It has been added again to my mix of drugs - methotrexate and enbrel being my main two. Hope it works for you too. The good thing about this site is you don't feel alone and have others that understand how you feel .

Patsy-57

[nomoreheels]

Hiya Tim & welcome. I am so sorry you were widowed young but there's no need to feel lonely any more, you'll receive help & support with your RD here!

HCQ was my first DMARD as my Consultant preferred the softly softly approach & it controlled me for just short of a year. When I was starting to need steroids to bring inflammation down he decided to include MTX (this is called double therapy) but unfortunately for some reason that didn't help so HCQ was withdrawn leaving me with MTX as my only DMARD. That plus NSAID, pain relief etc did control me & I've now been taking it 6 years now, first tablets & then injections. Not everyone reacts the same to MTX but you'd have a hard job to ask me to stop taking it. In fact I've recently had an increase from my normal (6 years) of 15mg to 17.5mg as my feet are showing that I have disease activity just now. My Rheumy & I discussed options, changing DMARD, adding another med or increasing my dose. As I'm otherwise well controlled on it the latter was considered the better option for me.

When I was on HCQ I suffered headaches & my eyes were sensitive to light. As I was living in Spain at the time I virtually lived in sunglasses! I also wore contacts but had to give them up as my eyes were so dry & no amount of comfort drops solved the problem. It's advised that before starting HCQ that we have an eye test to ensure they are healthy & to have a record of your eyesight. Also whilst taking it it's recommended in the UK you have an annual eye check to ensure no changes from in your eyes due to HCQ.

As different as we all are, severity of the disease & reaction to meds has a part to play as well. I'm unsure why you made the decision not to take MTX but it does work well for many. That said some people do struggle on it but that can be said for many of the meds used for RD. I hope you do well on HCQ but if you don't maybe it would be worth discussing your options with your Rheumy, there are other meds available to him in an effort to get you controlled.

I hope my experience helps & that the otother replies give you some info to work off.

[Hidden]

hi welcome you will find good support for you rd here I am sorry for your loss I too have lost my husband and was told I had rd a few weeks after and it can get very lonely you are among friends now ,hope you get sorted soon

[annie1954]

Hi Tim

That's a good move to join this site, as everyone is very helpful, and we all sadly have RA in common. I refused Methotrexate and have been on hydroxychloroquin for approx 2 year, and managing pain with paracetamol and ibuprofen. But I have an appointment the end of this month and I think they want me to take sulfasalazine, it's hard to decide what to do. I do need a strong pain relief as it's getting worse, so will ask them when I go. You do need regular eye tests when on hydroxychloroquin.

I hope you find lots of new friends on here as it's good to share problems and get things of your chest.....

Take care Annie

[annie1954]

Hi Tim, Annie here again, I'm so sorry to read that you have recently been widowed, that is so hard for you being so young.

I do hope you will find plenty of friends on here and once again a big warm welcome to you.

Annie

[TimCN]

Hi Annie, thanks you for your condolences and some info on your treatments. I'm interested in why, like me, you declined Metho but I can tell you that Sulfasalazine was an ok drug for me until I had to come off it in a hurry. Turns out that it was causing haemolytic anaemia. Not clever but it does NOT mean that will be the case with you. So long as you go for regular bloods, it's well worth a try. As for your pain I get on very well with tramadol but, again, not everyone does. Because it shares in the same naturally occurring brain chemical pathway as serotonin ( ie Prozac ) it meant I was able to stop the latter after 25 years!!! (I've battled with what seems like life long depression but then that's another story which coincides with my having being diagnosed with MS all those years ago). So with Tramadol, I get two treatments for the price of one - adequate control of my pain and freedom largely from my 'black dog' without the need for Prozac! Please tell me more about your two year experience with hydroxychloroquin before I take that plunge? The small risk of retinopathy with this treatment does cause me some concern I must say, but I will of course be going for regular eye tests. Thanks again, Tim

[annie1954 in reply to TimCN]

Hi Tim I had spoken to a district nurse regarding Metho as she was on it, and looked awful bless her she had lost over 2 stone.. Also another lady who I knew was taking it and she felt rough most of the time. So I decided if I don't have to have it I won't take it.

I don't think my family realise why I feel so tired and feel lethargic, I do work every day but by 6pm I am not much good for doing much else. I loved being busy and socialising but find it a big effort.

I have been ok on hydro but have these last few month had very dry skin patches which drive me mad with itching? I have no idea if that's the hydro or my thyroid problems as that makes your skin very dry.

I am hoping to speak to the consultant soon and find out as much as I can, as they did x ray my hands a year ago, and I have no idea what the results were or blood test. So I shall hopefully find out in a week or so. Also I seem to see him only once a year which I feel isn't enough???

How often do others see their consultant, I would be interested to know.

Any way Tim hope you find being on here with lovely people all willing to help when we need advice a help to you, like I do.

Have a good day

Annie

[nomoreheels in reply to annie1954]

I'm unlike you Annie, I jumped in feet first when offered MTX as HCQ, my first DMARD & my Consultant's softly softly approach, became less effective over a year having worked well in the beginning. I'd read of such good reactions to MTX so I was pleased when he considered it for me. 6 years on I still take it, the first year on tablets then switching to injections. I've just had an increase from 15mg to 17.5mg as my feet, where RD was first detected, show signs of active disease.

Anyway, the reason I was replying! I only normally see my Rheumy once a year & a Registrar at 6 months. That said I was down to see the Registrar 3 weeks ago but fortunately (!) she was behind with her appointments (at 10am!!) so my Rheumy took my appointment instead. I don't think my feet would have been examined if I'd seen her Registrar or as a consequence my MTX increased. Neither would I have been referred to Podietry & Chiropody I wouldn't think. So, what I'm saying is I don't think we see our Rheumys often enough, once yearly to see the Specialist when our condition can change in the meantime is not enough. If we're well controlled or even in medically induced remission maybe but not if we fluctuate & our bloods confirm that. My main reason for this is the last time I saw a Registrar he took me off 2 of my meds, one being my only NSAID & the other my steroid. I flared badly as a result & my Rheumy was not too happy he didn't ask her if this was the correct thing to do, as he should have. I was diagnosed whilst living in Spain & was well controlled once on the meds that suited me. I put that down to seeing my Consultant every 3 months & Registrars only ever working alongside the Consultant, with the approval of the patient & never take appointments single handed & any examinations done under the watchful eye of the Consultant.

[annie1954]

Thank you nomoreheels all advice is useful, it's so nice to have this site to speak to people that feel the same, as we all get fed up with pain and tiredness, but people that don't have this terrible disease don't understand how we feel ..

[nomoreheels in reply to annie1954]

Yes, it is a real help isn't it? I think it's one of those diseases that unless you have it you it's impossible to understand just how it affects us, especially when not well controlled, or even reasonably well controlled!

[lainee]

Hi Tim, this is a bit late but welcome how are you doing after 4 months?