Good morning and Happy New Year from across the pond,
I have a question in regards to Hydroxychloroquine. Lately, my bones have been aching. It hurts to place my elbows on my desk, it hurts to pick up my 1.15 lb. (I just weighed it) tape gun. This has been going on for a few days if not a week. I called my rheumy and she said to go off my Hydroxychloroquine. Has anyone else been advised to go off this drug due to bone pain? I've only been on it for approx. 16 months. I suffer from blurred vision due to having Sjogren's too, but more so since I've been taking this script. I have Lupus (SLE), and MCTD also. I push myself to work but I know I should stay home. Working is getting more and more difficult. Any thoughts on this drug. I think it's time for Methotrexate. I'm scheduled to see her Monday. Thank you in advance.
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Tessie62
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Thank you. Sorry for the delayed reply. I've been off work due to being snowed in. I will say, I'm surprised my Rheumy told me to go off of it instead of telling me to slowly go off.
hiya Tessie62. Sorry to here your in such pain I’ve been on hydroxychloroquine for about 10 years and on methotrexate for the past 2/3 years I suffer a lot with bone pain I have never been told to stop hydroxychloroquine my rheumatologist sent me for a X-ray & said I have & have arthritis in my bones so this might be something to discuss with them on Monday also eye drops might help with your blurry vision hope this helps xx
Good morning. Thank you for your reply. I was diagnosed with Osteoarthritis years ago. I'm wondering if maybe it could be a flare too. I was actually prescribed steroid eyedrops a few months ago as my eye doctor noticed a lot of inflammation. She also prescribed Restasis. Sadly, I only use it when I can remember. But even then, it doesn't seem to help.
I’m sorry to hear that you’ve been having a rough time with pain. I find from all of my lupus symptoms that bone pain is often the worst and the most difficult to manage!
I’ve been taking hydroxychloroquine 320mg daily for just over a year. Personally I don’t feel that it has made much difference to my joint pain (which is probably the most prominent symptom I have) however the rheumy has reassured me repeatedly that without it I’d most likely be feeling much worse 😆
Do you have wiggle room to increase the dose? A function of hydroxy is to help alleviate inflammation and therefore one would hope, joint/bone pain, by modulating the immune system so perhaps increasing the dose might help.
Overdoing it physically can absolutely make things more painful. I’ve found over the last year that I’ve really had to pay attention to what my body is telling me and teach myself how and when to slow down and rest (which is challenging for me!)
I think medicine for SLE is pretty much trial and error so it can take a long time to find the right combination of treatment. Have you had recent tests to check whether things are getting worse in terms of blood tests/ xray or ultrasound to examine the joints for active inflammation? When I told my rheumatologist that I didn’t feel hydroxy was adequate as I was still in a lot of pain, she ran these tests and was happy as the inflammation was not getting any worse. Therefore, advised me to try with other things such as heat packs, resting, gentle exercise etc. it can be tedious but effective over the long term.
Rocinante, thank you for the reply. One of the things I suffer with is memory. I think we've got ourselves in a predicament dealing with so much pain it overrides our memory. I thought my appointment was scheduled yesterday but when I called last Friday to cancel due to the snow storm we received, she said it was for the 13th. Whew! I'm glad I called. Anyway, you may be right. Maybe it does need to be increased. I'll talk to her about it next Monday along with pairing it up with Methotrexate.
I am the worst at telling myself no when it comes to getting stuff done. I was laying down yesterday scrolling my phone and my neighbor called and said she'd help me shovel my driveway off. I called my lawn guy to clear it off with his truck and shovel but since he never replied, she and I tackled it. Surprisingly I don't feel too bad.
I have labs run every 6 months. My wbc is chronically low so we especially keep an eye out for that. I detest iron infusions and will supplement with iron pills occasionally for fearing of the infusions.
I take this on a long term basis, but only three tablets a week spread out through the week. I think the idea was to keep me on an even keel and after around 4 years I think, it is working. Never had any problems with it. I have to say that I only have SLE on a mild basis and get warned on each yearly appointment to stay out of the sun or get well lathered up in protection.
Hi Milkybarkid! Are you referring to Hydroxy or Methotrexate? Please do be careful when out in the sun. Sun flares are the worst for me. I had to give up mowing when I switched shifts. Trust me when I say, Mild Lupus, usually gets worse with age.
Hi Tessie I've been on it years no problem, think your right about methotrexate it is time to include it my pain improved great I'm on it many years. Hope you will be ok soon. Sile
Sile, thank you so much. I am actually feeling better. I'm so glad to hear the positive note you gave on Methotrexate. I'm definitely going to ask for it with my Rheumy.
I have SLE and RA and have been on Methotrexate injections weekly for a year and Hydroxy daily for around 8 months as the Methotrexate alone was just not enough.
It is working however I agree with the above answers it it so important to learn not to overdo things physically. SLE and RA are always lurking in the background and if I forget this then man do I pay for it! I’m currently experiencing awful bone pain in my knees following a very busy work at work. Getting the balance between exercise and rest for me is so difficult. But with rest and a top up of ibuprofen the pain is easing, I’m terrified of going back to the start when the pain was just excruciating.
It is all trial end error I guess but just listen to your body, really listen. You know it better than anyone.
Hi Tess! Really you've truly been doing both scripts only for a year and under? I've been dealing with horrendous symptoms for years. It makes me think our Rheumies across the pond are less forward thinking. Does Methotrexate always need to be injected, or can it be taken orally too? Not that I have a problem with that. I used to inject myself weekly with allergies shots. I'm curious.
Also, I have slowed down a lot in the last two years because I quite agree. Listening to our bodies is key. However, I am only 62 and like to very much stay in shape. I dance to videos and do some light stretching and yoga. Other than that, pushing the lawn mower has been hired out.
Btw, I love your name. Have a wonderful work week,
Hi there. I don’t have a diagnosis of Lupus but mainly have Systemic Sclerosis with associated Sjogren’s and likely some mild Myositis overlap. Also I’m hypermobile.
I saw your title of bone pain and related as this is my main type of pain and always has been - although I have bad Raynaud’s and Erythromelalgia which are painful too plus spinal osteoarthritis. I was originally misdiagnosed with RA 14 years ago so have tried all same treatment plus. Now on Mycophenolate and Rituximab with Iloprost infusions for my Raynaud’s. I have noticed that Rituximab seems to have chased off the awful resting bone pain although it’s just started coming back a little - mostly in my knees overnight and from my elbows down into my wrists and hands.
It holds me prisoner when it’s bad so I’ve been trying to work out triggers for this bone pain - like awful toothache is best I can describe - and weakness too in affected limbs each morning when I wake. The best I can come up with is humidity and the temperature outside relative to environment. So sometimes warmth helps but if I get too hot then it’s worse. My weighted blanket helps a bit although not if I overheat. My neurologist felt this was rheumatic and my rheumatologist felt it was neuropathic but one thing for sure - it’s not osteoarthritis in knees, wrists or elbows in my case. So I’m guessing for me that it’s referred pain from spine or muscle /tendon related - maybe polymyositis which I’m antibody positive for. I don’t usually have raised CK when tested but perhaps my treatment regime masks this and I really don’t want a muscle biopsy to confirm given treatments are same. I hope you get answers that help as it’s horrible and I really sympathise. Hydroxy gave me hives but it actually really helped with this bone pain when I was on it for about 18 months many years ago.
Gosh mate, it sounds like you can't afford another disease on your plate. And I should complain? I'm so sorry for all your discomforts and what you must be going through on the daily.
I'm lucky in the sense, my knees have thus far held out. But I will say stapling paper with a stapler causes pain in my wrist. It seems so trivial until you experience it every single time. Barely tapping my elbow against the wall causes me extreme pain too. Why do they call it the funny bone any way. There's nothing funny about it when you're reeling in pain.
I too have osteoarthritis. I'm not a big person at 5'9" so every limb from my elbows, spine wrist, pelvis, knees and especially the top digits of my fingers show this disease best. My back has progressively gotten worse too.
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