Morning everyone, a little update. I had an appointment with my rheumatologist, by phone, last March. I’d taken myself off hydroxy, the only med I take. After almost 10yrs of taking it I suddenly started to get really bad side effects. Cut a long story short my rheumatologist totally disagreed with me & would offer nothing else as my bloods are always ‘normal’
So I’m now not taking anything at all. My problem is cramp. It’s waking me up several times a night. Basically I can’t move my feet or legs without them going into spasm. It happens during the day as well but way worse at night.
Is this to do with RD do you think? My consultant has made me question what I have. 🤷♀️ So two months totally free of meds. Well apart from the stiffness & pain in the mornings I’m doing ok & of course the cramp which happens every night.
I was right to stop the hydroxy. All the nasty symptoms I had have gone. I don’t know why I started reacting to the drug in a negative way after all those years of having no problems at all, maybe after having covid but I do know I was right to stop them despite upsetting my rheumatologist.
Hope your well x
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I am surprised your rheumy wanted to keep you on hydroxy for more than ten years. There's a small risk of eye problems associated with long term use. My rheumy would really like me to stop using it. I sympathise with the lack of variation in your blood tests, I have the same problem. The difference being my rheumy thinks symptoms are important. Have you had a scan/x-rays recently to check the progression with your joints? You could try asking for one. Or asking to see another rheumatologist maybe....
Hi, yes my rheumatologist was treating my symptoms rather than the blood results. Yes I’ve had scans & X-rays although not for a couple of yrs. He was going by their results as well. I was getting a thorough eye examination once a yr at the hospital & also with my optician. I will be changing my rheumatologist, after seeing him for 10yrs & he was always very polite I saw him in a different light. He wrote a letter to my GP & copied me in almost indicating that I was lying about the symptoms 🤷♀️ Why on earth I’d want to do that I’ve no idea. So I’ve completely lost confidence in him. But do you get cramp?
Under the section 'Treatment for leg cramps from a GP'
It says that if exercise doesn't sort it out, a GP might prescribe quinine. Maybe the hydroxychloroquine was treating you for cramps all this time without you knowing you had them.
Otherwise this article seems quite helpful for describing how to manage them
That’s just ridiculous! I hope your doctor takes that opinion with a pinch of salt. I take hydroxychloroquine too, I was really surprised that the last endo I saw - have never seen the same one twice since 2014/5 - said to carry on taking it even though I’m supposed to be in remission.
I know hydroxychloroquine can have irreversible effects on your eyes so I’d rather stop if they think I’m in remission, on the other hand I don’t half ache at times so I find my remission a bit odd really. In the meantime I have an eye test which includes an OCT scan every year plus I look out for lines that ought to be straight - not being straight if you know what I mean and so far everything is fine.
I get cramps, especially in bed. I don’t find tonic water or even the salt in a bag of crisps helps. I don’t know what causes mine but I suspect it’s linked to problems in my lower back. I hate the cramps especially when the muscle is still painful next day. Yuk!
It was all rather puzzling especially as I’ve only ever seen the same rheumatologist throughout. I think your right , I’m thinking the cramps have to do with my back injury which for some reason responded to the hydroxy. I have to say if I didn’t for some reason started to get ill on hydroxy I’d of continued taking it indefinitely as long as the checks on my eyes were ok. Great drug for a time.
I have periods of lots of cramps ie this past week horrendous and mainly at night but yesterday had a few moments during the day. I have tried magnesium supplements which work best for me and of course bananas and on the whole that has helped. I just get defiinte moments of it and it is so painful. The double leg one is awful.
When I first started with RA I had awful cramps. The backs of my legs from heel to bum . It was agony and would happen often when I sat down to eat. Also my feet cramp very painfully. I think it has definitely got something to do with RA because I never really had it before. Unlike normal cramp it often seems to be worse after exercising, especially in my feet. I find that fluids are essential. If I drink enough , especially in the summer, I don’t get it very much. Magnesium helps too.
My feet are particularly bad after doing aquafit. I often have to sit in the changing room until they settle so as I can drive. I’ll try drinking the bottle of water I take with me but don’t drink 🙄
In regards to cramps unrelated to RA, you might want to try a magnesium supplement. I take for example Promagnor supplement every day with my evening meal as I also sometimes get cramps (but nothing too bad) in my feet and toes. I'm not saying it stops my cramps, but cramps can be a symptom of a lack of magnesium.
Hi yes I have cramp in my toes especially when they feel “off”. I’m pretty sure it’s to do with the RA but don’t know what specifically sets them off. I also get cramp in my hands if they are in one position for a long time eg holding a phone or something. Think I’ll get some tonic water and try that 🤞
Yes I get it in my hands as well but somehow I cope better with sore hands than feet.
Note my diagnosis is Stills Disease which manifests as RA. I’m drug free and have leg and foot cramp often , especially in the evening. Sometimes it’s like the muscle is having contractions .Heat and gentle massage help a bit as does extra water during the day.
Thanks. I don’t know what Still Disease is I shall look it up. I rarely drink just plain water during the day going to give it a go. Massage certainly helps
I’ve taken a magnesium supplement for years, as my gp said it would help with my muscle spasms alongside my meds. I also take tonic water, it needs to be the good stuff, slimline apparently doesn’t have quinine in it.My cramps are in my feet, my left foot is worse where I have 2 subluxed toes. I do find that compression socks help. I also get the cramp in my left foot when swimming. I have AS rather than RA, and a lot of tendons have calcified and shortened, which I’m sure is a factor in my case.
My mother had RA and suffered very badly from cramps though I don't know if they are connected. I suffer them to an extent, at night and when swimming. In those days, we really did not know how to relieve them. They even happened in the GP surgery and the GP was useless. When a cramp comes on, you need to stretch the muscles that are clamping. For instance, if it is in the calf, then put your foot up at the bottom of a wall with the heel on the groud and repeatedly stretch the calf muscle by bringing your knee forward. It will relieve it immediately. (If it is in your thigh, then do a leg stretch by pulling your ankle back if at the front of the thigh but a similar exercise to the calf one if at the back of the thigh.) If you are not sure how to get the hang of it, see a physio or ask at a gym if you are a member.
Quinine will help stop you getting cramps. You can get it from the health shop or just regularly drink tonic water. There is quinine in hydroxychloroquine which probably prevented them.
As to your rheumatologist, quite frankly he sounds like a quack. I would not stay on hydroxychloroquine for ten years. I had retinal damage after two months but I am not sure it was caused by the hydroxy as I did not have an eye test before taking it, but it is suspicious. In any case, whatever medicine you take, you need to have a break from it. I find that nothing will work after a certain time without a break.
You might be best to see a rheumatologist privately in the first instance but make sure it is one who holds an NHS consultant appt. It will give you the opportunity to explain your symptoms, and you may be at the back of the NHS queue if you have already been seen. You can ask for a second opinion on the NHS but there is no entitlement to one. I got a second opinion once - the first hospital said a cough was caused by an allergy but the second one said it was caused by a viral infection - so they do not always agree with each other. Likewise, I saw a rheumatologist privately who said I had gout (having done no tests other than blood tests with a high uric acid reading) but the NHS one found numerous reasons for it not to be gout and confirmed by imaging that it was RA.
Thank you for your reply. Yes I do those exercises during the day & if the cramp gets really bad at night & wont go. But the cramp is happening every night & I’m exhausted. I’m convinced the hydroxy helped with the cramp but why is it happening. I guess I’m questioning if my consultant is right dad I or don’t I have RD???? 🤷♀️ I’m waiting for the three months to be up, the length of time I was told that the hydroxy would take to be out of my system & then see what happens. The private route initially I guess would be the quickest route to take
My mother suffered dreadfully with cramps - it is one of those things that doctors just dismiss out of hand and know nothing about. They appear to know nothing much about musculo skeletal conditions and I prefer to see a physio or osteopath.
I don't know what causes cramps. Massages are very helpful, eg deep Thai massages, which stretch the muscles. I have scoliosis which happened at the age of ten. It makes the upper back and neck muscles very tight and I have regular massages from an osteopath or physio or deep Thai. This makes me an inch taller and my neck longer for a while. The muscles can get tied in knots if you exercise them and they need stretching. You could see a physio for a better explanation. A lot of doctors have never heard of scoliosis. I kept going to the GP at the ages of 12/15 complaining and was then told I was too old for surgery and just to put up with it. I was not even offered any exercises or a brace. It has been the bain of my life and, contrary to their assertions, it can be very painful.
Defo taking Magnesium citrate. Soaking in epsom salt bath (magnesium) can be extremely beneficial. I struggle to get in & out of the bath, so I soak my feet in a bowl with Epsom salts which also is helpful. I was told years ago most people are deficient in magnesium as we age, hence our great granny’s & their epsom salt baths. But with our meds we deplete far more, since taking magnesium citrate my legs are far better. Do a little research to see, I know lots of people young & old who add magnesium to their diet in some form of supplement etc .. all the best
Don't know if this will help butI get cramps too. I've been on methotrexate and prednisone for about 9 yrs. I carry potassium pills w/ me and have them at home too. I take one at onset of cramps in hands, feet or legs and in about 10 to 15 minutes the cramp is gone. They can't hurt you and I don't take that many but they sure have helped me and allow me to get back to sleep or just keep on doing whatever.You might want to try them or ask your GP or RA Dr. if he's O.K with them.Hope it helps ----------
You should be able to get them in any health food store or drug store or I get mine right in the market-vitamin section--or the internet. Hope this helps , let me know. good luck.
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