Recommended to start Hydroxychloroquine?
Posted , 7 users are following.
Hi,
I went to see a consultant after some symptoms and an above average anti-ccp level (but she said not massively high so more an indicator of future than present). Was sent for an ultrasound of my wrists and fingers and have had letter today saying that ultrasound showed some thickening but no obvious ongoing inflammation. The letter says that this is possibly palindromic rheumatoid arthritis (with symptoms coming and going) and if I still have stiffness of more than half and hour and notice intermittent swelling, she would recommend putting me on a mild medication for it called Hydroxychloroquine. It says to ring them so am going to, as actually have had a really bad month with massive problems with my shoulders and neck which weren't present when I went for the appointment, so def think I need meds as have been relying on painkillers, but this is all new to me so not heard of any of these meds tbh, anybody have any knowledge of it?
Thank you xx.
0 likes, 10 replies
guinivere themorninggirl
Posted
Sue
themorninggirl guinivere
Posted
Thanks, sounds like it's a normal thing to start with then, will keep my eyes open for side effects!
sukes themorninggirl
Posted
I had to stop taking Hydroxychloroquine due to experiencing some serious side effects. I took it for about 6 and a half weeks in total.
Within a few days of starting, I had a constant headache, I thought that would eventually wear off as my body became used to the medication. Then I started to feel very nervous, it felt as if it was an internal nervousness. I had a sore throat and swollen glands, mouth ulcers and stomach cramps. I was itching and kept breaking out in welts on various parts of my body. By this time I was on week 6 and realised that I was quite breathless, even when just sitting and then I noticed that my eyes were not focusing properly, which is when I made the decision to stop them.
I hope this helps.
clare32950 themorninggirl
Posted
Hello I am waiting to see a rhumatolagist as my GP said I'd had a posative blood test but I'm not sure which one. My symtoms have been very intermittent and I keep thinking it's probably a mistake. I've had pain in soles of feet red knuckles that come and go and sometimes swell. The pain has not been awful more uncomfortable. Is this similar to your symptoms?
themorninggirl clare32950
Posted
Hiya,Yes similiar but mine have been more on my knuckles than feet. Tbh I've been having it just in an uncomfortable way for a couple of years and have had rubbish wrists for years but just kind of thought it was 'just a thing'. Only made myself go to docs as back studying and wrists really painful and that's when I got the blood test result. Tbh I'm glad I've gone now as my shoulder flared up so bad the other day I couldn't get out of bed for over an hour and took all day for stiffness to fully reduce, and now recognise that this happened a year ago too but I thought it was a pulled muscle as didn't have any knowledge of RA then. I would advise making a note of any symptoms of 'anything' even if you don't think they could be connected, as apparently the sooner you get it recognsied and start on treatment, the better it is. Good luck xx.
clare32950 themorninggirl
Posted
Thanks for the advice themorninggirl. I'm jotting all sorts down. I'm now getting a strange aching sensation above both knees and at the tops of thighs. No idea if it's conected. No swelling in those areas though. Good luck to you too x
Mollyjr themorninggirl
Posted
My rheumatologist also recommended hydrochloroquine. I looked up side effects and they scared me more than the disease itself. Actually I really have no symptoms excep my hands were getting swollen upon awakening but ok after an hour. I had a RF of 240. This was over 18 months ago. Since then I went for a bone density test that found I was needing more vitamin D. I spent a month in the Florida sun in January and started taking vitamin D3 on suggestion of another doctor who tested my blood/urine for calcium and Vitamin D levels. haven't had the stiffness since and this is the end of February. My anti cop is less than 200 whatever that means. I thought I had palindromic too cause I would have pains here and there but they have subsided for the past two months miraculously since I've been getting more vitamin D. Just to be safe, get tested. It may help.
themorninggirl Mollyjr
Posted
Thank you, I have rung the consultant's secretary and she is putting me in for an appointment to talk about it, so will discuss with her then. But also have an appointment with my own doc on Tues as wanted to talk to her about pain relief and what I should be doing until see consultant, so I will ask her about Vit D. then too, and will look into it all xx. If it was just my wrists playing up I would definitely be more reluctant, but I have had a couple of days when I literally couldn't move, it felt like my bone was stuck to the bed and my skin and muscles were trying to pull me up, if that makes sense? Complete agony too, and with three kids and studying it's not something I can manage lol! Will definitely be looking into everything I can do to reduce this though, and hopefully reduce medication need.
heledd77 themorninggirl
Posted
There seem to be mainly negative experiences here so by way of balance I can say I had only one very mild side effect - mild nausea for around an hour a day but nothing that stopped me going to work, working out, etc and it stopped after a couple of months. That was two years ago. I guess what's I'm trying to say is everyone I see different and if you do experience bad side effects your dr can work with you to look at alternatives. You won't know until you try but it might work for you. Good luck!
patyrod themorninggirl
Posted
I have been taking hydroxychloroquine for about nine months. I get a bubbly stomach after I take it. The only other side effect is hair loss, but that could be from my disease. In addition, the doctor started me on methotrexate six months ago, but I have not experienced any side effects from that. Just like you, I was hesitant to start these meds. The phrase "joint erosion" made me go forward with them. That fear overrode the fear of the meds. Luckily for me, the benefits have been greater than the side effects. Hopefully, that won't change. Remember, if you take meds and they bother you, the med or the dosage or the method (oral or injection) can be adjusted or changed. If your joints or bones dissolve, I don't know if there is much that they can do.