I posted here 4 months ago after my first Rheumatologist appointment. At that appointment ,I was told I have Fibromyalgia and(I feared Lupus as I have a positive ANA 1:640 homogenous) given 2 cortisone shots in my neck and prescribed Plaquenil. So on Dec 18th I went back, 2 more cortisone shots and Prescribed Amitriptyline 10mg daily(nightly). I am on the Amitriptyline 32 days now.It has helped with sleeping a bit, falling asleep and getting back to sleep quicker. I wake 4-6 times a night still, not with the usual neck pain but because I get really hot all over(like my blood is boiling)..not a sweaty hot, just hot, then I push off the covers to cool off and wake up freezing cold, and so it goes until I get up.This week I actually feel worse than I have for ages too,....more headaches and extreme thirst. I assume these are side effects(?) from either drug. If they are will they eventually subside? I want to give these drugs time to work, but not if this is going to be the way it is all the time. I also have pernicious Anemia and inject B12 twice a week.
Any advise is so appreciated....
Thanks
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patmackfin
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Pat, I take both those medications, and do not recognise those symptoms personally. Headaches however, can occur with both. My advice would be to see your GP, as soon as you can, as it could be you are simply not able to tolerate one or both, there are alternatives. Time of course has to be given to a new treatment, but not to the detriment of your daily living, and restorative sleep for example is a must have, and you are not having restorative sleep and it needs addressing. Good luck.
Should I try to get an appointment to go back to the Rheumatologist who prescribed them Or my own GP?(who I haven't seen since the Rheumy).. what do you think?
Well usually you would have to go back to your GP first, and they can put a request in for you to be reviewed, or even write to your consultant for advice on your medications. You could, however, ring your consultant's Secretary, in my experience they can be so very helpful, explain what is happening, and ask if your consultant would be willing to do a phone review with you.
Thanks Karen, It's hard to know what's "normal" as far as getting used to the meds and side effects.Everything I've been reading has said stick with it.... it will get better. I will call next week, thanks again
You are very welcome. I do understand that one does need to give time to new drugs, but I work on the premise, not to the detriment of being able to function, so if your struggling, then I say it is reasonable to seek opinion and advice, no matter 4 weeks on a drug or 4 years. Best of luck Pat.
Over all I think it did help, he is pretty surprised at how stiff my neck feels it seems. I never asked for these shots, he kind of just does them. Last year I had 12 physio appointments on my neck,(before I saw this Rheumatologist) sometimes I can't move it at all. It's been better lately.
I ask because I believe that "fibro" is often a lazy doctor's diagnosis. What you are describing COULD suggest polymyalgia rheumatica - which responds to a moderate dose of pred (management not cure). And a very similar presentation may be found in ankylosing spondylitis - though I would hope that the right imaging would have been done to rule that out with your neck problems. It is characterised by night time back pain. PMR tends to show early morning back pain - about 4-4.30am.
funny you should mention that, because I had a discectomy performed in 2012, my L5-S1 disc prolapsed.After initially recovering after the op and feeling better,I went on to have nightly back pain for 3 years ,after which time I was diagnosed as being severely B12 deficient, and later D deficient. I had my loading doses and soon learned to self inject and did more frequent injections(than doctors think is needed) and as a complete surprise to me over time( 6 months to a year of frequent injections) the nightly pain disappeared.I had a brain and neck MRI done a while ago, because of daily headaches and they said it was "Fine" I have a bulging disc but it doesn't indent the spinal chord.It says C4-C5 degenerative disc disease without impingement. and gentle reversal of the cervical lordosis, whatever that means(I wake with numb fingers a lot). Thanks
I have taken both meds and didn’t have these particular issues but we are all different. I entirely agree with LupusKaren that improved quality of life lies greatly with restorative sleep. I would see your GP first as they will have a copy of your rheumy’s letter and may increase your dose of Amitriptyline or take you off it to see which medication, if either, is causing your headaches. With my experience of both drugs the side effects can change over time. But it’s your GP who prescribes and monitors both I think so probably best to ask them in the first instance.
So I went to see my regular doctor as a couple of you had suggested. I explained about waking up hot and cold while taking the Plaquenil and Amitriptyline and feeling worse than ever lately. The doctor printed out the letter sent to her from the Rheumatologist stating that because of the positive ANA he had put me on a trial of Plaquenil to see if it works, and if it didn't work on the pain he was basically going to "park" the mixed connective tissue idea/diagnosis and go with chronic fibromyalgia instead, also commenting on the physical exam findings.
So my doctor took me off the Plaquenil today and said to stay on the Amitriptyline for now and gave me a prescription for Cymbalta (30 mg a day for two weeks and then 60). She put my hot and cold nights as being (peri)menopausal symptoms starting to kick up a gear,(I turn 50 in March).
I am confused now.... she looked up interactions on the computer while I was there and said it was fine, but me being me, I looked it up myself just now and this is what it states :
Using amitriptyline together with DULoxetine can increase the risk of a rare but serious condition called the serotonin syndrome, which may include symptoms such as confusion, hallucination, seizure, extreme changes in blood pressure, increased heart rate, fever, excessive sweating, shivering or shaking, blurred vision, muscle spasm or stiffness, tremor, incoordination, stomach cramp, nausea, vomiting, and diarrhea. Severe cases may result in coma and even death. You should seek immediate medical attention if you experience these symptoms while taking the medications. Talk to your doctor if you have any questions or concerns. Your doctor may already be aware of the risks, but has determined that this is the best course of treatment for you and has taken appropriate precautions and is monitoring you closely for any potential complications. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.
I am totally confused and fed up. I feel like just going back to managing the pain myself with extra vitamin B 12 shots and Motrin as needed, now that I (think they finally) know what's causing all these pains.
She did say to eventually get myself off the Amitriptyline and just take the Cymbalta, that it helps better than Amitriptyline for pain and may even help the upcoming peri-menopausal symptoms.
Any thoughts or experiences would be very helpful.
Hi Sue, no, thankfully based on the Plaquenil not doing much to help with my headaches etc the doctor and Rheumatologist concluded that I don’t have SLE.I feel a lot better now, a month on, taking Cymbalta in the morning and Amitriptyline at night. My official diagnosis is Fibromyalgia.
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