I have lupus, Raynauds & erythromelagia. I haven't posted for ages but I've been really struggling recently and wonder if anyone else has noticed muscle wasting and weakness whilst taking Hydroxychloroqine? It has been getting worse over the last year or so. I've been on the HCQ for over 5 years now. I stopped it, with rheum agreement, in early November but stopping it hasn't made any noticeable difference.
I take Fexofenadine for the itchy skin and to help me sleep; Amitriptyline 10mg for the pain of erythromelagia (and to help me sleep as well); Lyrica 225mg ditto; Vit D 800iu; Losartan 50mg (ostensibly to help prevent chilblains from the Raynauds); HRT because...and until a couple of months ago I was taking Ibuprofen, Paracetamol & 60mg codeine phosphate every night. Then I worked out that it made no difference to my burning feet (erythromelagia), so I stopped all those.
My lower leg muscles are weak & wasted as are my "core" muscles. I've been going to the gym for about 6 weeks , using equipment specifically to strengthen those muscles but I don't notice any improvement in strength or endurance.
So, is it one of the meds or a combination of them causing this problem? Or just bad luck ? I am 65 and have always been strong. Now I can't walk upright, my legs are weak, my balance is shot & I tire easily.
Nerve conduction tests were essentially normal and a muscle MRI the same.
Anyone else out there with a similar picture? Thanks.
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skylark15
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Hello skylark, am glad of your update and will be vvv interested in replies as they roll in...I hope there will be something really helpful to you...and I hope others who are in treatment for lupus & conditions like myosotis, which involve muscle wasting & weakness, will reply. I wonder whether the results of tests & imaging you've had are actually definitive in complex patients like us
As you know, I only have had 6 years in the lupus diagnostic & treatment process, but I am 63 and when the NHS recognised my lupus + associated immune dysfunction & connective tissue disorder conditions (including simultaneous raynauds & erythromelalgia), we found out I'd been diagnosed & treated for infant onset lupus. My history of relentless cumulative multisystem damage + signs & symptoms fits with this history
I have lived through years of creeping cumulative muscle wastage & weakness in my arms & legs & core, which didn't improve over decades of conscientious exercise + lifelong yoga & meditation. And, likewise, chronic fatigue + loss of stamina & resilience which didn't improve with rest and conscientious lifestyle management and complimentary therapies etc. That was all during the 3 decades before my lupus was rediagnosed and treatment begun.
In 2011, when daily lupus treatment finally began, hydroxy did agree with me: from the outset my joint pain damped down. But eventually we realised I needed prednisolone & mycophenolate in order to see a vvv encouraging degree of reduction in the muscle wastage, weakness and the chronic fatigue + lack of stamina & resilience (which in my case appear to be allied to other chronic neuro cerebral signs & symptoms. Early onset Sjogrens is playing a role in all this alongside my version of lupus)
having benefitted greatly from the trial & error of a diagnostic & treatment process under a True Detective rheumatologist at a dedicated Lupus & Vasculitis clinic in a leading university hospital, who is as interested in clinical signs & symptoms as in test & imaging results, I find myself wondering whether your rheumatologist has offered you a trial of some sort of immunosuppression & prednisolone at least? I guess I'm wondering whether your muscle wasting etc seemed coincidently related to hydroxy, but possibly are more down to subtle inflammatory process/lupus generally
I was in a similar situation; for a long time I was on meds that were not helping to control my lupus, and had constantly sore/tight muscles and I felt like my whole body was slowly getting weaker. I had creatine kinase tests (for muscle inflammation) but they were always normal. When I finally found meds that worked for me (also MMF in my case), the all-over muscles pain/weakness slowly decreased as my flare came under control, but I have had to work with a physiotherapist to try to regain my strength and deal with lingering back pain.
Gosh Bebe: that's really good...myco can do wonders...and when I land on the sort of physio who really helps, that's just as wonderful. (Am so glad you mentioned your creative kinase results being normal 👍)
Thanks for your reply to my post. I'm so glad you eventually found a treatment regime that helped. How long have you been working with the physio and do you feel stronger as a result of the specific exercises?
Hi Skylark15, I started off slowly on my own, just walking on the treadmill for 20 minutes. Initially I had to walk slowly as I was in pain, but eventually built up more stamina as the MMF took a few months to kick in (about 6-8 months). I initially went to a physio for my chronic back pain, but she did an overall assessment and said I was below average in strength (which I already knew at this point). So she got me started on glute and core exercises, and eventually back and shoulder exercises. I also continue to walk on the treadmill or ride on a stationary bike. I find even going on level 1 is better than no exercise at all! So far I have been regularly for about 1 year, but most of that is for my back problems - it would probably be fewer sessions if you are just going for assessment + strengthening exercises, as you can do them at home, and get re-evaluated every month or two, I imagine. However, reading your response below about elevated CK, I would get a second opinion on that if possible. I am not sure how helpful physio would be if your muscles are already inflamed. Do you know if your lupus is currently active? You may need to try something stronger meds (steroids/immunosuppressants) as coco mentioned. These meds can have bad side effects, but everyone reacts differently. I wouldn't be functional without them!
Thank you very much for your reply to my post. My husband has said right from the start that I should ask for a trial of steroids and/or an immunosuppressant but I have been very reluctant, after my sisters' experiences. Your response and that of the others makes me think that I will ask for such a trial this time.
Your "True detective" rheumatologist sounds excellent, as does the idea of a dedicated Lupus and Vasculitis centre at a University hospital. I was referred to my current one as a "Lupus specialist" but I always see his Associate and the management of my symptoms and signs doesn't feel terribly pro-active. I'm due to be seen on 30th January, with bloods beforehand. My CK has been consistently raised (since anyone thought to check it), at 900+ then 600+, so dropping over the year but still way higher than normal. The rheums don't seem too bothered by it: "We see much higher levels than that", was their response to my querying it!
It all feels like a bit of a struggle at the moment. And returning from a shortened session at the gym feeling as if I've gone 10 rounds with Mike Tyson doesn't help!
I think you're right: a trial of something is due....could you specially request an appt with the chief to discuss the way forward?
I gave myself 2 years from starting daily hydroxy before friends here on forum convinced a vvvv reluctant me to press my consultant for a prednisolone trial.
In my case, Rheumatology offered me a 4 week 10mg pred taper...which definitely proved I benefitted from moderate to low dose pred. When I needed more than 3 of these tapers that year, we decided to try me on daily myco.
Meanwhile Rheumatology will be comparing your bloods etc results to your baseline test results....establishing what's your "normal" range etc
Now, a few years later, am feeling less pain & more stamina + resilience at 63 than I have since my 20s.
We're all different...and your sister's experience is significant....but I hope you'll press your consultant for this sort of trial
You're right, we are all different but having a group of people all pooling their symptoms and experiences as well as their medication, is a big help. It has certainly encouraged me to give steroids a try. I'm glad that you have found a regime that helps.
I will ask to see the chief next time, if the Associate demurs. Thanks.
Hello Skylark, I am also in my early 60's and luckily for me, my lupus appears to be uncomplicated and doesn't interfere too much with my lifestyle. I do get tired and could sleep for England! Have generalised osteo arthritis, sun sensitivity and general aches and pains but that's it (long may it last!). However, I do have one suggestion - the gym is great if you enjoy it - but have you tried yoga? I've been doing it for several years now and 3 times a week since I retired and notice that my core strength and suppleness are greatly improved. It's been a really gradual process but its well worth a try - even if you only benefit from the relaxation and breathing exercises!
Thanks so much for your helpful reply. Sun sensitivity, tick; osteoarthritis, tick! Sleep for England...well I would, if my burning feet would let me, hence 1.00am posts! I have tried yoga, a long time ago and long before my various auto-immune things were diagnosed but I would always, without fail, fall asleep at the "Relax and breeeeaaath" bit and my friend would have to wake me! Pilates seemed better but I can't balance, nor lift up my arms to hold a position and I got tearful and frustrated. However, there's a woman living nearby who has come back from being wheelchair bound after two hip replacements (I've had both mine replaced too) and with wicked arthritis, to walking 10 miles comfortably. That was through treatment with yoga and nutrition advice as well as the usual physio stuff, by a local specialist physio. Maybe I'll give it another try. Thanks again.
First, I would take you off ALL your meds and start over. Rarely plaquenil causes muscle weakness (but it can). Sleep problems from lupus and erythromelagia are not that uncommon (also excessive fatique). I am NOT a rheumatologist, (I am a retired Neuro-Ophthalmologist with lupus, Reynauds and neuropathy (similar to you). I stopped pLaquenil and am now on methotrexate, neurontin and low dose steroids........which have reduced my symptoms drastically. I would suggest Ambien or the newer drug Belsomra to help sleep. YOU MUST CONFER WITH YOUR RHEUMATOLOGIST TO SEE IF THIS MIGHT BE OF VALUE TO YOU......ONLY HE/SHE WOULD KNOW BEST.
Thank you for your reply to my post and the advice. I will be seeing my rheumatologist at the end of the month and I intend to ask some more pointed questions. The increasing weakness and wasting of the muscles worries me and it means my husband and I can't walk the hills of Italy and Spain, as we used to. I even think twice before walking to the end of the drive to post a letter! Very frustrating. I will keep you posted about what happens at that consultation.
'Eyedr' had great advice for you; as a matter of fact it is not uncommon to develop thyroid disease from lupus. I knew from some of my symptoms I had hypothyroidism (now on Synthroid)..........btw: I suggest you never take a generic med for ANY hormone medication prescribed.
When I had all my symptoms and could not figure out what was wrong, I went to a friend of mine that is an Endocrinologist.......it was she that figured out that I had a severe case of lupus where all my other Dr. friends kept telling me there was nothing they could find (I kept showing a negative ANA), so all was well...WRONG.......about 2% of people with lupus will continually show a negative ANA. She knew me very well and was determined to find the cause of my symptoms (this was after 4 years of suffering). After 17 different blood tests, she confirmed the diagnosis. I was very lucky to have partners who carried much of the weight of our practice.
If I can ever be of help, please contact me.
Dr. S.
P.S. I came up with the name 'vaderviper' because my oldest son was one of the designers of the original Dodge Viper. (vader means father, hence vaderviper means father of the viper).
Thank you for your reply to my post. An endocrinologist, huh? My thyroid tests have been consistently normal, both on and off treatment but maybe I'm not having the exact test to pick up a problem. There's masses of thyroid disease in my family. Another question to ask the doctor.
And it is the symptoms that we all live with all the time, that dictate how we feel and how we cope (or not), isn't it? Rather than the test results. Thanks.
I have myasthenia gravis in addition to other ailments and that gives me that terrible weakness. I've been fighting a flare of this lately and my rheumy increased the prednisone to 25 mg last week. I'm already seeing improvement. I agree with "Barnclown" and wonder why they don't have you on that.
I have had the same weakness in my muscles. I have SLE Fibromyalgia, Addisions, Diabetes and Shogrens I had a blood test a few weeks ago and it was found that I was low on Vitamin B12. After 6 injections I am now feeling much stronger. It's another thing to look at. Good luck xx
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