hi all , I went to see a new rheumatologist and she thinks I also have fibromyalgia
I’m on 4mg of prednisolone and I’m really struggling to drop , I have terrible pain at the base of my neck it feels on fire and making me feel sick i don’t want to keep upping my preds
She wants to put me on amitriptyline but I know this can make you feel awful
has anyone been on this and has it helped at all
Thank you
Where in the neck exactly is it? When do you get the pain? Presumably you’ve had a scan or at least an x-ray?
Hi it’s the base of the neck going up back of my head feels inflamed and I can feel it when I’m sleeping and worse when I wake up and I feel sick with it.
I have had a X-ray that showed general wear and tear
I feel awful every morning I have taken 5 Preds to see if it helps
Have you seen anyone who deals with the musculoskeletal mechanics side of things such as a physio or osteopath? I’ve had similar with chronic neck muscle issues.
However, I have to say I also had this same before diagnosis with GCA. I would also be trying to get better imaging and not be happy with hopping straight to Fibro on the basis of just an x-ray.
You might have occipital neuralgia like me, and I was on amitriptyline for a long time. I took it at Night and it takes a while to shake it off in the morning.
I had neuralgia on one side of my face years ago it’s very painful I went to 2 dentists thinking it was my teeth , where do you get the pain ?
I totally agree , I told her I don’t think I have fibromyalgia I definitely don’t have all the symptoms
She said my bloods are all normal so there no way it can be GCA and it’s definitely not wear and tear causing this amount of pain
Would you ask for a mri of the neck ?
You wrote, "She said my bloods are all normal so there no way it can be GCA".
I believe she's wrong to say that. The Pred is keeping your bloods normal, so GCA wouldn't show up through blood tests, but that doesn't mean it can't be GCA. If she doesn't do anything apart from offering more drugs, could you ask for a second opinion?
The other thing of course is to treat the pain like a flare and add an extra 5mg per day for a week to see if that settles the pain. You can stay on the higher dose for up to 14 days without affecting your adrenals, but after 10 days you should be back to normal, so that you can safely drop back to your 4mg per day dose.
If you're still in lots of pain then perhaps go and see an Osteopath or a Chiropractor. My wife had lots of upper back pain, and a Chiropractor sorted her out with just a couple of sessions.
Regarding painkillers, I've found that Codeine with Paracetamol tablets are the best for me. My PMR pain is controlled by my Pred, but I also have problems with my lower spine, and I find that Codeine tablets knock that pain out very efficiently. I can't take Ibuprofen, but if you can then you could try one of those or an Aspirin, or a Paracetamol tablet or two to see if that helps with the neck pain.
I agree and this is my second rhumy
I was thinking a chiro but my neck is so stiff I would be worried what it would do , I have upped my preds and I can already feel the difference so stay on this for now
Thanks
If more pred helps - IT IS NOT FIBRO!!!!!!!!
Ok so you think if when I up my preds and I feel bette it won’t be fibromyalgia
Have you tried painkillers? Do they work? Have you tried increasing pred say by 5mg for a week or so? Did that work? If the pred increase works it will not be fibro. If the painkillers work it might be fibro. If you have not tried the tests, do them at separate times so it is easier to see the effect.
I have upped my preds just by 1 mg to see if it helps , I will take paracetamol to see if it helps
I have been very achy in my shoulders also
She done a short synacthen test and it was 370 and she told me to drop my preds from 4 there’s no way I can drop with this pain
It is probably worth upping it by 5mg to make sure you are hitting the PMR on the head if that is the problem. You could then just go back to your current dose if it makes no difference.
That would be going up to 10 , can I just drop back down to 5 after a week ?
No reason why not if it works within the two week allowance. If it does work you could do a double drop the first a bit above that dose which you know was OK. If it doesn’t work you could just drop back.
Yes you can 😘
ok thank you , I will do that
Hi ,yes i have it takes a while to work but it helped alot. When my pain eased i stopped taking it. I still have some for back up from my Dr, no side affects at all. It is used to block pain it helped me . Hope this helps.
Hi Rottsuzi
I had a similar problem when attempting to come off prednisolone after nearly 10 years. I was put on hydrocortisone as a half way house and given amitryptiline, which did help. You can stop when you feel the pain is under control. It might help. At a low dose it is used as a neuro pain blocker.
Good luck xx
Hi , did you come of preds and go on to hydrocortisone also did you have any side affects with amitryptiline
I’m really struggling to get down the preds
Hi,
Yes, I replaced 7.5 mg Pred with 15mg Hydrocortisone. Then added Amitryptiline. The first couple of days I was sleepy but it did the trick re: pain management. So no serious side effects. I was advised to take them at night to help me sleep.
I’m just about to reduce Hydrocortisone to 10mg after an ok sonacthen test with a referral to Endicrinology to oversee the eventual stopping altogether but with a super slow reduction.
Hope this helps.
Xxx
Can I ask what you synacthen test was
Do you what it was, or what were results?
I have been on Amitrityline for over 20 years ,first prescribed for fibromyalgia when I was in my 60s. I am still taking it at night and usually get a good nights sleep. Was diagnosed with PMR 3.5 years ago and after a few ups and downs now take 5.5mg Pred. The problem with Amitrityline is the difficulty stopping taking it , the good nights sleep seems to depend on it once it’s been started. 😐🥱😴
I have fibro & pmr. I take amitryptylline, but not for either of those diseases! To give the full picture I have Polymyalgia, Osteoarthritis in hands, hips & feet, Trochanteric bursitis on left side, Sciatica on right side, Fibromyalgia, Familial high cholesterol, Asthma, Hypertension, Hypermobility, Essential tremor, Orthostatic hypotension, Coccydinia, Haemangioma, spinal, & Macular degeneration. I was having trouble with sleeping, & had a lot of muscle pain problems & cramps at night. I take amitryptylline as a muscle relaxant. I take it early evening, or I’m very drowsy the next morning. I now drop off to sleep much better…but am usually awake from 4am onwards. I think it’s used for several reasons, but normally associated with pain relief. If the pain at the base of your neck is caused by muscle spasms…you will only know if you try it!!
I have been on amitriptyline for some years now. Started taking a quarter of a tablet to help me sleep. Which it did. After the arrival of polymyalgia the Doc put me on two a night. Each morning I felt dreadful. Like a zombie. I reduced to one a night and have no further problems. Be prepared to feel very sleepy (which is why it is recommended to take at bedtime).
I can’t see any reason not to take it as long as you can manage the dose accordingly. The only reason I have continued with Amitriptyline is that I now can’t sleep without it???
good luck
Thanks , this is the problem I don’t want to add another medication that’s going to make me feel more tired I want something to give me a lift that’s why I’m reluctant to try it
I know it’s a catch twenty two but I feel awful as it 🤦♀️
hello yes I have been down that exact same route, I was on that to. I took it at bedtime, my husband is on it now and he is finding very helpful for his neck pain . Give it a try .
Hi, I think you must be my pain twin. I was diagnosed with GCA 3 years ago and am currently reducing pred (now 3mg). However, they cannot explain the ongoing headaches which start from base of skull/ neck area. I have a kink in my neck (cervical spondylosis) which is apparently normal wear & tear for my age and would not cause the level of pain. So they are treating it as ‘something else’. Neurologist believes it is evolved migraine and I am on sodium valproate (for headaches not epilepsy). Lots of info on migraine charity site, which details other meds for headaches (not painkillers.) I took amitriptyline for pain shortly before this diagnosis and it worked well and I had good sleep. They wanted to put me on this again for the headaches but it is not recommended for those with occular hypertension (thanks pred). I also had GON (Greater Occipital Nerve) injections in base of skull, 2nd one coming up.
I think/hope my current pain is more muscular/skeletal/posture etc . Piglette has put lots of info about this. Also consider getting a book on chronic pain, I have read that when you have pain for a long time, the brain becomes very sensitive and over reacts to perceived threats to the body.
Sorry for long post. Let us know if they come up with any solutions- I would love to know😊
It’s very frustrating, I was doing ok but every time I get below 5 mg I struggle and then she tells you but your bloods are fine and now endo telling me to drop it’s awful and very hard to live with these headaches.
I will definitely get a book , thank you and I will let you know how I get on
Hello. Medicines affect people differently, don't they. Personally I've found Amitryptiline really helpful. It takes a couple of weeks to work fully. I only take 10mg a day, at night. It's best to take it at about 8pm as I find I'm very "relaxed" in the morning if I take it at bedtime! It's excellent for nerve pain.
That’s good to know , are you taking it with prednisone
Yes, for over a year now so through a taper from maybe 20mg when I started. I'm now on 3.5mg pred and having regular cortisol blood tests because my adrenal function has gone to sleep . I'm not allowed to taper further until it picks up. I also take naproxen twice a day. Both the Amitryptiline and the Naproxen are for back pain and sciatica while I wait for cortisol injections and a caudal block. As I said, the Amitryptiline is a great help. I hope you find your solution.
just throwing this out there, but amitriptyline has never made me feel bad at all.
I've been taking 50mg Amiltriptyline at night for years. It helps me sleep despite the pain. I take it approximately 12 hours before I want to wake up. I'm not aware of any unpleasant side effects.
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