hi all , a very frustrating nurse visit yesterday after over 3 years on preds and methotrexate for 9 months they are now saying after a excruciating headache back in November and a X-ray of me neck I have facet arthropathy and that’s what’s been causing all my pain absolute nonsense
So I said let’s stop the methotrexate right away and if that’s the case It should be a breeze to get of the preds oh no keep on all the meds but why If that can be treated with ibuprofen , I honestly have no words I have pain in my feet pain behind my knee and terrible new pain in my groin but that’s normal it’s time for a new direction but what do I do in the meantime with all this medicine?
any advice would be so appreciated x
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hi , definitely need another rheumatologist now , with facet arthropathy are you in pain all the time I’ve just read about it and it’s saying back and spine pain which I don’t have, when I get the headache it’s not one that a ibuprofen would take away and I am violently sick with it . I’m so sick of not getting answers .
Hmm - adds to the problem doesn't it. Have you asked PMRGCAScotland for advice about recommended private rheumies? Since you don't have the choice of who with NHS referral do you?
The headaches don't sound typical of GCA though - maybe a neurologist?
Are you sure headaches aren’t migraines? GCA headaches don’t usually make you nauseous - mine certainly didn’t in the months before diagnosis -and it’s not often mentioned on here. Although Ibruprofen not helping could indicate GCA…
I don’t think it’s a migraine it’s a pain that starts at base of my neck and gets progressively worse over days the only thing that help is when I up my prednisolone which they are not happy about so I have not to up them again .
It’s on the drop of pred I took the last headache I was trying to drop to 31/2 .
everyone is different but i used to get throw up migraines, so bad that when I threw up, i felt worse, not better. Nothing helped. Many trips to er, husband almost carried me, for morphine (I don’t think they use that anymore). Had injections, physical therapy, massages, etc, A pain doc finally said they were myofascial migraines, had me start using lidocaine pain patches, worked well. Eventually after more years, they kind of went away although sometimes I still feel one coming on and use a pain patch that does the trick.
I have spinal stenosis, inflammatory arthritis and PMR, I also have all over foot pain. I am taking prednisolone and Methotrexate, having changed from tablets to injections a week ago. Last night when I laid my head on the pillow I had a bad pain in my neck going up into my head. I haven’t had this before and I’m wondering if it’s a side effect of my second injection on Tuesday. So difficult to deal with these ever changing symptoms/side effects. I understand your frustration and hope you can get some answers.
The nausea/vomiting may therefore be adrenals...and co-incidental with headaches.. but as said previously not a good situation for you... it does need a linked up view. .. so sorry you aren't getting that at the moment.
If it were me I think I'd stop the MTX first and see how you do. To taper off the pred with the adrenal function as primary concern could take a lot longer.
I did say that to her what is the point in injecting myself once a week if I don’t have this and I don’t really see what it is doing for me as I’m still hitting stumbling blocks as I lower the preds
Sorry to hear about your news , it's so frustrating.Of course , there is nothing to stop the possibility that you have Facet Arthropathy and PMR , although doctors can often have a frustrating habit of thinking they have to substitute a new diagnosis of something for the old one.
As PMRPro said , try getting help from PMR / GCA in Scotland about info for Rheumatologists for a second opinion that are well known in the area.
When it comes to treatment , if your FA is severe , and they would consider Steroid injections or steroid treatment to the area to bring the inflammation into control so they may well want you to remain on the current medications and taper slowly to see if it will improve the issue before considering other treatment options like surgery.
Facet Arthropathy and Facet Joint Syndrome are usual together . The inflammation in the Facet joints more commonly cause lower back inflammation which can cause both inflammatory and nerve pain ( if nerves are impinged) . This pain can radiate through the hips , groin and upper thighs.
If your FA is inflamed and certain lower facet joints are impinging your nerves it is not uncommon to suffer sciatica and other nerve pain issues that can cause intense pins and needles and numb pains in the knees and feet.
Finally , if you also have Facet Joint inflammation in the upper facets you can get intense pain in the neck and back of the scalp.
Any inflammation, misalignment and impingement in the upper back and neck can cause specific types of Migraine pain , these migraines , if not suitably treated will happen every day and get worse through the day with activity. They also cause nausea , and in some cases , vomiting , tinnitus , dizziness and can effect vision in short periods.
If you Facet issues and Migraine are causing nerve pain the steroids alone will not reduce that pain.
Even if you never experienced Migraines before you can begin getting them at any time as a symptom of another health condition or just for common reasons for chronic migraines starting like nerve impingement, poor circulation, low oxygen levels , vision changes and Stress.
Migraine is not simple . Chronic migraines which are migraines happening between 15-21 days a month or having a migraine lasting between 6-10 days a month can have various symptoms and names. Cluster migraines , for example can be linked to other conditions and are triggered by inflammation from those can last for days , weeks or even months at a time unless the things that trigger them are controlled.
They invariably cause nausea and if you have this you should get an antinausea medication from your GP as part of your migraine or pain management , the common one is Cyclizine and I'd suggest you request this from your GP. Minor vision changes or aura can occur in little episodes ( flashes , wigglies , strange light ) as can other issues like tinnitus , numbness , brain fog , slurred speech , trouble moving and coordinating , sleep issues and even chest pain and palpitations.
If you are getting Migraine pain , for some or a number of days, with any other health condition , including Facet Joint Syndrome, PMR , Various Arthritis , or Fibro it needs to be treated alongside the other conditions and may require their own daily medication until the cause is under control.
Steroid medication and NSAIDs are not always enough. If the nerves are also involved a combination of both nerve pain and Inflammatory pain is required , and you can start trying medications from discussions with the GP.
You would also benefit from being referred to a Neurologist and to your Pain Clinic noting the causes are Arthropathy associated migraine and limb numbness.
Migraines aren't usually touched by ibuprofen or paracetamol.
Medications like Sumatriptan , Amitriptyline or Tricyclic medications are an early option .
Unfortunately, unlike PMR, severe Migraines don't have a specific medication that can be started and instantly clear it because there are usually many different causes happening at once for them happening.
Each medication needs trying for a number of days or weeks to see if you respond.
Sometimes Betablockers are used if the Migraine is triggered by changes in circulation.
For certain headpain only Indometacin will help. Hemicrania continua, is little known about or recognised by doctors but is actually very common and can happen just to one side of the head all the time , or in some rare cases on both sides .
If your Arthropathy is causing misalignment in the back or impinging nerves it can also mean that Migraines can only be treated by medication and physical therapy and help from a Chiropractor .
Spinal Cord Stimulation treatment and long term therapy can often improve both spinal issues and Migraine.
Some migraines are resistant can require injections if anaesthetic to the scalp , Botox , and they even have their own last effort range of biologics.
Migraines feel slightly different than GCA head pain as someone with experience of both . But unless you have experience of Migraine you can't be sure which of these issues you are having until you have been checked for GCA .
But Migraine pain can be that severe . Everybody assumes it's just like a bad head and sore eyes but long term untreated Migraine can feel like a stroke , cause tremors and epilepsy like symptoms and even effect the chest with palpitations and pain that can be confused with heart issues.
Your Rheumatologist should have referred you to other departments for additional help , but you should go to the GP to get help for the Migraine pain now , and if you haven't had recent spine and neck x-rays order those. Tapering off oral steroids and MTX would need to be done carefully alongside finding out the ways that Facet Syndrome, or other types of Arthritis and spinal issues are best treated as for sometime those drugs will be part of the treatment. Tapering will be more complex until the head and Facet issue is sorted out , especially if you have PMR as well.
hi , thank you so much for taking the time to write all of this and some wonderful information,
I’ve had another headache episode yesterday once again dropping the preds to 41/2 it seems to co inside the the pred drop which is weird , I did take nortriptyline that the rheumatologist prescribed and paracetamol it feels better today but not sure if it’s worth staying on this for a few days , I have a gp appointment tomorrow see what they say , I’ve been having terrible groin pain but no lower back pain so not sure what that is , just need to keep at it till I get to the bottom of it .
I know it’s not adding up it’s not happening regularly just seems to be when I drop the preds and the last time I dropped was end of September been at 5 for so long now
Well in that case a suggested by PMRpro is probably is your body adjusting to the new lower dose….steroid withdrawal symptoms as described in this link- and one good reason to use a slower tapering method ….
That’s exactly why I haven’t dropped any sooner and the nurse took my bloods the other day and she said if the bloods are normal then it’s not pmr , talk to my gp tomorrow see what he think , he has been brilliant with me
“and the nurse took my bloods the other day and she said if the bloods are normal then it’s not pmr “
Not necessarily true - Pred keeps the blood within the normal range -that’s their job-and as we know they very often lag behind symptom.
Plus steroid withdrawal symptoms do not necessarily raise inflammation -for me it was a few days of feeling off colour and a bit ratty - but like premenstrual issues -certainly not GCA ish.
The nurse is wrong. For one thing, if you are on enough pred your markers SHOULD be low. And they take quite a while to rise, they can lag a long way behind symptoms. Symptoms - or the lack of them - always trump markers. If the markers are raised it doesn't automatically follow that it is a flare and a single raised result that isn't accompanied by symptoms should never result in a knee jerk increase in dose.
I developed secondary adrenal insufficience from long term pred use. Your headaches sound exactly like when I go into an adrenal crisis except I also get nauseous. Upping the prednisone dose would stop the crisis. But if you're already taking more than 5 mg of prednisone a day it is highly unlikely that this is an adrenal crisis that you're experiencing.
hi that’s funny you say that I took the headache when I tried to drop to 31/2 that’s the lowest I have ever got to I walked into the rhumy nurse crying my eyes out I felt awful, so what did they give you for that ?
I have to up dose. I normally take 25 mg of hydrocortisone (20mg of hydro=5mg pred) a day. I start by doubling my dose. If that works ill continue doubling my dose for a couple of days. But I have an emergency injection to use if I can't keep the pill down because of vomiting or I need much more then a double dose.
I've just read this...what a nightmare for you. Can you get to private doctors? Neurologist, neuro-opthalmologist..? I mention that specialty only because of the headache starting at the base of your skull....occipital nerve? In my case, in 2022, I was diagnosed with occipital neuralgia. At that point I was relieved that was the cause, it was treated and no more headaches. I have GCA, high-dose steroids starting in 2019, and now down to four, but only after coordinating with those specialists along with rheumy.
When I was tapering, I also inject Actemra weekly, at 10 mg, it was only 1/2 of 1mg each month. It took a long time, but it worked.
I hope you get to see someone soon, my best to you.💞💞
hi , it definitely is in the occipital area I did have neuralgia in one side of my face years ago it was very painful , this is definitely new pain to what I have experienced before with my pmr pain I took another one yesterday and I dropped my preds to 41/2 this week and I have not tapered for a few months stayed on 5 as that seems to be my magic number.
The forum taught me how to be my own advocate. Initially I just took and did as I was told....the more educated we are and can pose these questions to the doctor, the better off we are. Our bodies are really our best guide....and the forum.💞
definitely I was arguing with the nurse the other day because I was told they had 30yrs experience and it’s a? if I even have pmr , I said I can assure you I did I couldn’t lift my arms to wash my hair I had lost alot of weight also would facet arthropathy cause you to not lift your arms and I told her about the forum , she was not happy or interested 😡
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1st Rheumatologist appointment and instructions etc. 
Flare at 5 mg press 20 mg mtx
Visit to Rheumatologist 
Not sure if I have PMR and my preds are not working
9 years and counting with PMR!
