Hello everyone. This is my first post although I've been reading for a while. I've been taking 200mg twice a day Hydroxychloraquine (Quinoric) since March/April. I felt an improvement after about 6 weeks but the longer I've been on it, the worse I feel. I have agonising pains from shoulder to elbow, locked up hands loss of strength and intense shooting pains that come from nowhere. I cannot sleep and dread going to bed. I also have very itchy flaky scalp. I take Naproxen as well and have been prescribed Amitriptyline to help me sleep but I am loathe to take it as it made me too sleepy next day. Looking at the side effects on the leaflet it states that muscle pain, weakness and spasms are an uncommon but serious side effect and should be reported to your rheumatologist. I spoke to a RA nurse last week (telephone consultations only at the moment) and she said to keep taking the Hydroxychloraquine, the Naproxen and up to 8 paracetamol per day. I'm thinking about slowly stopping taking the Hydroxychloraquine to see if its what's causing these terrible muscle pains. They were going to add Methotrexate a while back but not now as my blood readings are all back to normal. Has anyone experienced anything similar with intense muscle pain ?
Hydroxychloraquine : Hello everyone. This is my first... - NRAS
Hydroxychloraquine
Hydroxychloroquine is the standard starting medication and it is quite typical to add another medication along the way. I would say it sounds like the Hydroxychloroquine alone is not enough to “ hold” your RA. I would also stress that there are many of us here who have normal blood readings ( inflammation markers in normal range) but we clearly have inflammation ( hot, red, swollen, stiff, painful joints). It sound like you need a more sympathetic rheumatologist who looks at you as a whole and ask how you feel to decide on your medication needed. I think you need to push your team to say Hydroxychloroquine is not enough. If they considered Methotrexate previously I think you need to now ask that you can try it ( I suggest they will want you to remain on Hydroxychloroquine too unless it is believed you are reacting to it in some way). In the meantime keep a diary of symptoms and any photos that may help you when you do get to speak to your team. Best of luck.
I am surprised you did not start on mtx first! I also agree with deniseelk push for mtx also. I was started on mtx and then hdry was added and finally leflumomide. I think you would be doing well with only one drug! Keep to going your rumey until they listen, because only you know how your body is a d when you have pain. Good luck. Take care. X
Welcome Plumsoul.
Hydroxychloroquine I was allergic to. You have been on this drug long enough for side effects to settle down but saying that we can develop rejection of these drugs at any time . This has just happened to me . Was on MTX for 4 years no problems then suddenly had aside effects so had a months break then restarted I was fine . I also started entanercept in January I totally fine to begin with . Started to get symptoms they thought it was a flare . Steroids but but things got worse so last week I sent an email to my nurse.(apologised for the length of it😁) but I detailed everything left nothing out. No interruptions so I could get everything explained. The best thing I did now I know entanercept is not for me in fact some of problems is the medication not the disease.
Be proactive you know your body better than anybody else and communicate with the nurse the best way for you but don’t be fobbed off .
Hi Plumsoul
I’m shocked that all you have is HCQ and NSAID drugs. If you have a diagnosis of RD, it must be treated aggressively as soon as possible.
MTX ie methotrexate is the usual first drug, often along with HCQ ie hydroxychloroquine.
Your disease is obviously not being controlled in spite of ‘normal’ blood work results.
If you feel that you want to push for better treatment, please do use methods others have suggested, including photos, notes, and the fact that blood work is not definitive in assessing your overall condition with RD.
Also, as another person suggests from time to time when others express their sense of being overlooked, take someone else to appointments with you, write down what is said, ask for all notes etc provided by you to be included in your case file. This results in better attention and higher standards of care given to the patient.
If NSAIDs are not making a difference, don’t keep taking them.
I was firstly prescribed (before referral and diagnosis) naproxen then diclofenac, neither of which touched the excruciating pain I was enduring 24 hours a day.
After diagnosis, and after MTX and HCQ together had quelled the RA activity, I needed Celocoxib to help with stiffness that lasted most of the day but was told I could not take it every day along with the MTX.
I was then prescribed Paracetamol which worked but I was uneasy taking that all the time. I took it for two weeks whilst searching for an alternative myself, and came across studies showing that certain natural substances were just as, if not better than, NSAIDs.
Since then, I have taken turmeric curcumin (with biopeperine which is black pepper) capsules along with boswellia seratta capsules and very rarely suffer stiffness from RA.
It won’t help with RA pain though. And I went for higher doses to begin with, twice a day. Now, I take it just once a day at a lower dose.
Best of luck getting the best, most appropriate treatment for you.
Hi Charisma , just wondering are you still taking mtx , and using tumeric, the reason I ask is because, I was taking tumeric capsules for a few years and I did find it helps with stiffness etc , but when I went on mtx a few months ago , my rheumy nurse said not to take the capsules and I never asked her why x
That’s a shame... I always check interactions, and tell my Rheumatology team what I want to take in addition to prescribed drugs, and with no other underlying health issues anyway, they said fine to taking the curcumin (there’s a difference between turmeric and curcumin extracted from it) etc.
lyfebotanicals.com/health/t...
So I have kept taking it since about May 2016. I stopped MTX two years ago but was taking it for years at the same time as turmeric curcumin and boswellia seratta.
I hope that helps.
Very informative article thankyou Charisma x
Hi Plumsoul. So sorry to hear that your rheumy team don’t seem keen on adding in the MTX now. You have given the Hudroxchloroquine long enough to work. It does sound like you need something adding in. I have been advised that the combination treatments tend to work well too.
As others have said and rightly so and the case for me that the bloods don’t give the full picture at all. Mine definitely don’t and I am pleased that my team take everything on board not just my blood tests.
I have recently had MTX added to my Sulphasalzine and even in week six I can tell there have been improvements for me.
Definitely get in touch with your team again and if you can send some photos over with an email outlining everything you are feeling with symptoms. Please don’t just stop your meds though as this could cause major problems for you.
Good luck and let us know how you get on won’t you? x
Thank you everyone. My wife, who likes to research everything, has always said she was surprised I was not on a combination of RA meds. But my pain now seems to be muscular, not joint. I have only had face to face with rheumatologist twice, now everything is by telephone with RA nurse. Makes it more difficult if they cannot physically check you. Either Hydroxychloraquine is not for me or something needs adding. Pain is worse every day and dreadful at night. Mostly my arms, shoulders and hands.
Another vote for continuing to push for a different approach. I started on Hydroxchloroquine and Methotrexate and when things stopped improving they added in Sulfasalazine and several weeks later things are so much better! Sometimes we need to be polite but firm in continuing to ask for improvements.
Hello Plumsoul,
Most of my RA symptoms arrived all in a rush after a slowish start in my knees. One of the new symptoms was agonising muscle pain in my upper arms, definitely worse at night to the extent of having me in tears. My hands were swollen and stiff. I used to say it was as if they were made of wood. These things occurred before I was getting any treatment for RA. After taking Hydroxy and Methotrexate for a few weeks, plus some Prednisolone for a while, both symptoms faded away. As other people have said, you need to start MTX asap. Aggressive treatment, as laid down by NICE, is the answer.
That sounds very much like my experience. I've just had the callback from the RA nurse after they'd reported my problems to the Rheumatologist and I've been advised to keep taking Hydroxychloraquine and have been prescribed another course of steroids.... for the fourth time. What happens after that I don't know.
Hopefully the rheumatologist will get you started on methotrexate and start reducing the steroids soon after that.
I wish you well.
Hi
There are such a variety of drugs and remedies out there which is necessary as we are all so different and our systems react differently.
I have been in remission for 6 yrs but am now having flares. Due to lockdown I was put on naproxen- made me sick, hydroxyc- gave me pins and needles and now etnarcept, which I'm tolerating and🤞is so far working.
However, 6 yrs ago those other 2 drugs worked alongside methotrexate.
My bloods have always been normal.
My rheumy team are currently reluctant to use mtx due to immune supression effects.
What really helped me b4 was swimming 3 times a week. Gave me strength and something else to think about and some control. Getting the right drug combination takes a while and when you get there it helps but you need to chat with your rheumy team and keep a diary to achieve some relief.
Have you looked at NRAS or Versus Arthritis? They give lots of help.
All the best and take care of yourself.x
I love your name! When you had remission did you take any meds? I’ve been very fortunate and had periods of remission ( 2 were triggered by getting flu) I didn’t take any meds when in remission
Lol thank you. I've not really noticed a remission to be honest.
The main thing I've learnt is tell the professionals about your pain, your reaction to drugs and take photos. Some drugs take a while to settle but some side-affects make you wonder if it's worth it and sometimes they are. 6 yrs ago it took me about 4 months to get use to mtx but it really worked for me alongside hydroxy. This time round the hydroxy effects were awful, really severe pins and needles. I'm on arcoxia now and it's worked with the inflammation but i am a bit out of it in the mornings!! Hopefully that'll ease. Keep going you're worth it😁
Hiya. My name kinda is a reaction to being back with RA ...aghhhhh! No, I didn't take any drugs for the last 5 yrs but tbh i took my eyes off the ball over the last 2 yrs. I've put on weight, not enough exercise and allowed stuff to stress me out and then a virus hit me🥴.
So deep breaths. Here I go again. Just love Dolly Parton😁
Your humour and positive attitude will help you get through. I’ve just got back from hospital where I had both my knees drained of inflammation and then a steroid shot in each of them. I’ve never had that done - it wasn’t too bad.
I’ve had RA since I was 38 ( I’m nearly 68) but I’ve been blessed with remissions so not RA for 30 years thank God). My last remission was 12 years with no meds. It felt like a miracle.
In those years I walked about 25 miles a week ( I don’t drive) went to yoga which I love and ate a healthy diet. I had loads of stress in my life during those years tho - my daughter went off the rails ( she’s fine now ) and I looked after my mum with dementia. It’s a very mysterious disease. I’ve been 80% vegan for a year and that improved things for about 5 months until lockdown.
Let’s hope we both get remissions again! Wishing you all the best, Ann
I hope you’re taking a tummy protector with Naproxen. My consultant said I could go on it but didn’t tell me to take protection . A friend who was an ex nurse alerted me after about 3 months of taking it.
Yes Omeprazole was prescribed at same time.
That’s good. All the best.
Hi Plumsoul - I too get aches and nasty pains in between joints and I think it's tendons. Do you know which RD you have? Tendon pain called enthesis (or something) is quite common with psoriatic arthritis. It feels like muscle pain.
Tha you everyone. It's been good to read all your replies and advice. I've just had the callback from the RA nurse after they'd reported my problems to the Rheumatologist and I've been advised to keep taking Hydroxychloraquine and have been prescribed another course of steroids.... for the fourth time. What happens after that I don't know.
I have question regardng Naproxen.
Hip pain like I've never experienced before!!
Naproxen for back pain (Protuding discs causing nerve pain and muscle spasms )
Blinkin' 'eck..I can bearly walk!
What pain meds for flashes of pain?
